Recruit & Retain Participants

This article describes how considering cultural factors can improve the care and recruitment of people with dementia from underrepresented minority groups.

In this review article, researchers summarize the importance of caring behaviors in the recruitment of older African Americans with chronic illness.

In this review article, researchers discuss the ethical aspects to consider when recruiting people with dementia for clinical trials.

This resource examines how the U.K.-based Join Dementia Research registry strongly bolstered recruitment efforts.

This article explores why and how to incorporate critical race theory into dementia caregiver recruitment efforts.

Science Friday, a podcast from WNYC Studios, has released an episode that discusses brain donation.

This resource summarizes the results from focus groups with African American older adults in which they discuss their beliefs about participation in clinical research.

In this article, researchers examine the effectiveness of a community-based strategy to recruit participants for a dementia study.

This article examines how race and ethnic background impacts sources of recruitment and eligibility for an Alzheimer’s preclinical trial.

This study tested the effectiveness of different strategies to improve the clinical trial experiences of hospitalized older adults with dementia and their caregivers.

In this study, researchers examined the perspectives of Asian American and Pacific Islanders regarding their participation in a research recruitment registry.

The University of Washington Alzheimer’s Disease Research Center has launched a Spanish language website with diverse resources for health care providers, individuals experiencing dementia, and their loved ones.

These three videos are recordings from the “Racism and Its Implications in Clinical Research” workshop hosted by the University of Pittsburgh Alzheimer’s Disease Research Center.

Resources from the Wisconsin Alzheimer’s Disease Research Center to help inform and recruit American Indian veterans into clinical trials.

This review article from NIA provides strategies to increase awareness and participation of Hispanics/Latinos in AD/ADRD clinical research studies.

Watch the Become a Research Hero video on the importance of participating in Alzheimer's disease research.

The Vanderbilt Memory and Alzheimer's Center offers information about joining research studies and brain and tissue donation.

Cleveland Clinic Lou Ruvo Center offers a video, brochure, and webpage about the role research plays in helping to diagnose and find treatments for neurodegenerative diseases.

This article highlights how concentrated community memory screening events can be an effective and efficient recruitment strategy for Alzheimer’s disease research.

Researchers assessed direct-to-consumer APOE genetic testing usage and their attitudes toward using this information in clinical trial recruitment.

This paper describes the researchers’ experiences in establishing and maintaining a diverse Alzheimer’s Disease Prevention Registry.

A report that overviews the Washington University School of Medicine Knight ADRC's “African American Participation in Alzheimer Disease Research: Effective Strategies” Workshop on research participation.

This research examined the effectiveness and differences in using both traditional and social media materials for the recruitment of African American versus non-Hispanic white participants.

This research article describes the Minority Aging Research Study's brain donation challenges, processes, and successful procurement with older African American adults.

The CARE registry is addressing the gap and disparities in research participation among Asian Americans and Pacific Islanders and encourages participating in research.

Dr. Jonathan Jackson and the Massachusetts Alzheimer’s Disease Research Center give a webinar about direct actions researchers can take to improve diversity and equity in clinical research studies.

In this two-page flyer, a healthy participant who does not have Alzheimer’s disease describes why he decided to participate in Alzheimer’s research.

The Massachusetts Alzheimer’s Disease Research Center offers an eight-page handout and presentation on participating in Alzheimer’s disease clinical research.

This brochure provides an overview of the Alzheimer’s Outreach Program at the University of Pittsburgh Alzheimer’s Disease Research Center, which invites African Americans age 60 or older to participate in research as healthy volunteers.

A one-page flyer from the Wisconsin Alzheimer’s Disease Research Center explains the brain donation process in six simple steps.

The BrightFocus Foundation’s Clinical Trials Finder asks a series of questions to help users find an appropriate Alzheimer’s disease clinical trial. The foundation has also developed a brochure, “Clinical Trials: Your Questions Answered.” BrightFocus funds scientific research worldwide related to Alzheimer’s disease. “Turning Point” is a documentary (2.5 hours, 2017) that provides an inside look at the doctors, scientists and patients who are working to uncover the mysteries of Alzheimer’s...

The authors of this integrative review found that passive, indirect recruitment strategies have been the default approach for enrolling older African Americans into chronic illness-related research studies, including Alzheimer's studies. They recommend the use of proactive, culturally appropriate recruitment approaches, combined with caring recruiter behaviors, that explicitly target older African American adults and that involve direct interactions between prospective participants and the...

For the Alzheimer's Disease Neuroimaging Initiative 3 (ADNI3) trial, 462 new participants were enrolled. Recruitment metrics were recorded on 82,003 unique visitors to the recruitment website and 3,335 calls to study phone numbers. The recruitment sources that produced the most screening and enrollment included online advertisements, local radio and newspaper coverage, and emails and referrals from patient registries. According to the authors, ADNI3 is an example of how a data-driven approach to...

The rarity of disorders caused by frontotemporal lobar degeneration (FTLD) leads to recruitment challenges for related clinical trials and difficulties with adequate power to detect treatment effects. The authors of this systematic review recommend developing personalized endpoints that are most clinically meaningful to individuals and their families, devising more powerful approaches to analyzing heterogeneous clinical and magnetic resonance imaging data, and developing new fluid biomarkers and...

Using the CTSdatabase, a registry with more than 60,000 participants, the study authors found that nearly 4% of participants who were screened for memory loss studies visited more than one site within two years. Potential Alzheimer’s participants who went to additional sites did so predominantly for nonmemory conditions, often major depressive disorder or schizophrenia. According to the study authors, multiple enrollments confound efficacy and safety signals in clinical trials. They speculate...

For this study, 10,450 participants enrolled in an initial cohort study were asked to complete a six-lesson interactive education course, AlzU.org, about Alzheimer’s disease. Participants in the highest lesson completion group demonstrated the greatest screening rates for the Anti-Amyloid Treatment in Asymptomatic Alzheimer's Disease (A4) trial. In a subsequent randomized-controlled trial, 351 new participants were enrolled in the six-lesson course (n = 180) versus a time-neutral control course...

This systematic review examined 22 published reports describing recruitment and retention of individuals from underrepresented backgrounds in Alzheimer’s disease research or underrepresented participants’ perspectives regarding participation in such research. The authors concluded that considerable scientific gaps limit the use of prior efforts by scientists to bolster inclusion of members from underrepresented groups. They recommend that future studies on this topic use improved methodological...

The University of Washington’s Alzheimer's Disease Research Center (UW ADRC) provides a webpage with information on current studies.

The Michael J. Fox Foundation, which focuses on elimination of Parkinson’s disease, has developed study recruitment materials that are applicable to other areas of disease research.

In this British study, 33 researchers working on dementia trials in care homes completed an online, qualitative questionnaire outlining their experiences and the perceived benefits and challenges of data collection from people with dementia (as opposed to only collecting data from caregivers or family member proxies). Five main benefits from obtaining the direct perspective of people with dementia in research were identified: (1) improving the delivery of person-centered care, (2) hearing the...

Patients with Parkinson's disease face barriers that can make it difficult to travel to clinical trials. These include having dementia, loss of driving ability, timing of medications, impact of reduced mobility, and bowel and bladder concerns. Many of these barriers also affect patients with Alzheimer's disease. In this pilot project, researchers sought to assess the feasibility and effect on research participation of prearranged rides through a third-party ride sharing service for research...

This article describes the information-gathering process that led to the creation of two educational resources designed specifically for the Hispanic/Latino population, The Precious Gift Brain Donation Brochure and the Brain Donation Steps Handout. In a review of the National Alzheimer’s Coordination Center’s (NACC) database for June 2005–May 2016, the authors found that people who self-identify as Hispanic/Latino made up only 8 percent of participants enrolled and 3 percent of the deceased...

The public-facing database of the Massachusetts Alzheimer’s Disease Research Center (MADRC) includes prevention and symptomatic trials and is searchable by posting date and title.

1Florida Alzheimer’s Disease Research Center uses an FAQ format on its website to answer basic questions about clinical trial participation.

This article describes the study design of a dual-objective, Phase III clinical trial in individuals presymptomatic for Alzheimer’s disease. It addresses the particular challenges for delay and prevention studies. These include: Ensuring that the trial population, cognitively normal at outset, contains a sufficient number of participants at increased risk of cognitive impairment onset during the trial time frame to avoid prohibitive trial size and duration. Finding appropriate measures to detect...

This article describes the methodology and initial recruitment findings for a study that estimated prevalence of cognitive impairment and dementia in Mexican Americans compared with non-Hispanic white people in Nueces County, Texas. The study was aligned with the parent BASIC project, a population-based epidemiological stroke surveillance project, funded by the National Institutes of Health since 1999 to identify differences in stroke prevalence among Mexican Americans and non-Hispanic Whites...

The authors analyzed the strategies used to recruit participants at three sites in a large, 15-site dementia study in England. They concluded that successful recruitment of people with dementia and their caregivers requires multiple strategies, close coordination between researchers and clinical service providers, and a detailed understanding of the needs and perspectives of the target population. The authors recommend that large studies should be expected to evaluate and report on their...

The University of Pittsburgh Alzheimer's Disease Research Center (ADRC) publishes a biannual, 12-page publication for a lay audience.

Rush Alzheimer's Disease Center (RADC) has created a searchable research database that includes recruitment-related information, such as study designs, enrollment and autopsy timelines, and other relevant information.

The Patient-Centered Outcomes Research Institute (PCORI) created this repository of more than 150 tools and resources for use with patient-centered, stakeholder-engaged research. Repository items are developed by recipients of PCORI research grants, and the Institute makes them publicly available to encourage the use of these engagement practices and methodologies within the broader healthcare research community. The database can be searched by keywords or by criteria in the following categories...

The article addresses ways to facilitate study partner participation in clinical trials, such as by removing logistical barriers, offering payment, and providing paid, protected time off for study visits. The authors suggest that incentivizing participation, especially among non-spousal partners, could improve overall recruitment rates and generalizability of study results. Largent EA, Karlawish J, Grill JD. Study partners: Essential collaborators in discovering treatments for Alzheimer's...

Dimensions is a twice-a-year publication of the University of Washington Alzheimer’s Disease Research Center (ADRC).

This resource page for cultural competency training focuses on implicit bias, which is an unconsciously held set of assumptions about a social group that affects judgment and decision-making without conscious awareness of that influence. In health care, implicit bias has been associated with disparities in provider–patient communications and relationships. The website provides links to a video series, reports, research articles, and an implicit bias test.

This website provides resources to support effective communications with potential, enrolled, and past participants in clinical trials. The target audience includes sponsors and funders, investigators, study teams, and institutional review boards/ethics committees.

The homepage of the Indiana Alzheimer Disease Center provides one-page online referral forms that patients or their clinicians can use, respectively, as a first step in volunteering for research on Alzheimer’s disease and other dementias.

The online Mesulam Center Registry begins with an FAQ page, followed by six pages of questions to collect basic contact and health information and to gauge specific interest in research participation.

The Alzheimer's Prevention Registry was established and is led by the Banner Alzheimer’s Institute (Arizona Alzheimer’s Disease Center) and is a partnership of 11 health organizations.

The NIH website, NIH Clinical Trials and You, contains several pages for researchers and trial sites: Improving Visibility of NIH-Supported Clinical Trial Activities and Results: Describes the NIH policy, similar to the FDA “Final Rule” reporting requirement for funded clinical trials: Trials must be registered at ClinicalTrials.gov, and summary results must be submitted no later than 1 year after the primary completion date. Clearly Communicating Research Results Across the Clinical Trials...

This community engagement program at the University of Florida bridges the gap between health care and health research by providing health education, health screenings, and wellness resources. It also links participants with clinical studies.

The Clinician Partners Program is a 2.5-day "mini-residency" for health professionals who serve older adults living in rural or semi-rural areas of Missouri. It is offered through the Rural Educational Outreach Initiative of the Knight Alzheimer’s Disease Research Center.

Registry for Remembrance is a community and academic partnership to educate and recruit African Americans for long-term research participation at the Emory Goizueta Alzheimer’s Disease Research Center (ADRC).

This 20-page handbook is intended as a resource for people who have been diagnosed with memory loss. A shorter version is available in Spanish.

The Healthy Brains website is an online resource center that provides individualized brain health assessment tools, lifestyle tips, information on clinical trials, videos, and medical news.

This report shows the feasibility of recruiting individuals age 90 and older into longitudinal clinical research and provides preliminary guidance related to the effectiveness of recruitment strategies.

The purpose of this mixed-methods interview study was to elucidate how people with mild cognitive impairment and their study partners decide whether to enroll in clinical trials.

Researchers conducted focus group interviews with five groups of stakeholders to ask about their views on receiving results of an amyloid positron emission tomography (PET) scan.

Researchers tested a two-step process for recruiting asymptomatic, amyloid-positive individuals into clinical trials.

To address the challenges of recruiting patients into early-phase trials of mild cognitive impairment and Alzheimer’s disease, a memory clinic was implemented within the clinical trials unit of a biopharmaceutical company.

This paper describes the design and development of a tablet-based decision support tool to enhance shared decision making and decisional capacity for people with a genetic condition that causes development problems and cognitive impairment who are participating in the informed consent process.

Through retrospective analysis, the researchers tested the potential utility of using a GIS tool as part of a targeted recruitment strategy for reaching populations that are challenging to include in dementia care clinical trials.

Trial managers and other staff from five active United Kingdom-based randomized clinical trials were interviewed to explore retention strategies and factors that influence which retention strategies the team chose to adopt. (Dementia was the clinical topic of one of the five trials.) The study authors reported that the role of trial staff and their underlying behaviors influence the practices of the team members responsible for retention, and that institutional emphasis on recruitment can...

Semi-structured qualitative telephone interviews were conducted with 17 staff members from a United Kingdom-based Alzheimer’s trial (Reducing pathology in Alzheimer’s Disease through Angiotensin TaRgeting, RADAR) to explore barriers and facilitators to recruitment. The researchers found that challenges to Alzheimer’s trial recruitment can occur at the care pathway and at clinician, patient, and companion levels. They suggest that recruitment can be facilitated by improving diagnostic processes...

This 12-page booklet describes Emory University’s Alzheimer’s Disease Research Center (ADRC) and its current opportunities for clinical trial participation, plus information on its research activities, clinics, educational offerings, and research registries.

More than 25 plain-language informational brochures in English have been developed to enable and improve communication between clinical research staff and research participants. Most of the brochures are available in an additional 15 languages.

NIA’s "Clinical Trials and Older Adults" booklet covers the what and why of clinical trials, benefits and risks of participating, and how to find a clinical trial.

This systematic review included 19 studies that involved recruitment and retention of African Americans (15 studies), both African Americans and Latinos (2), and Asians (2). Four major themes were identified for recruitment strategies: community outreach (94.7%), advertisement (57.9%), collaboration with healthcare providers (42.1%), and referral (21.1%). Three major themes were identified for retention strategies: follow-up communication (15.8%), maintain community relationship (15.8%), and...

GeneMatch is a first trial-independent research enrollment program designed to recruit and refer cognitively healthy adults to Alzheimer’s prevention studies based in part on APOE test results. It enrolls individuals aged 55 to 75 years who live in the United States and self-report not having a diagnosis of cognitive impairment. Participants enroll online and are provided a cheek swab kit for APOE genotyping. Participants are not told their APOE results, though the results may be used in part to...

This searchable repository of articles related to engagement in research is organized around four types: papers describing engagement experiences; papers on research findings that also report on engagement; studies of engagement practices; and other important works that guide the field, including frameworks, conceptual models, and editorials. The repository is maintained by the Patient-Centered Outcomes Research Institute, which works with healthcare stakeholders to identify critical research...

"Curing Alzheimer's: Clinical Trials Are the Key" is a 24-page guide, available in English and Spanish, that provides information on clinical trials, Alzheimer's disease, and participating in Alzheimer's disease research. An English-language video also provides information to prospective trial participants.

An online survey of 556 recruitment practices across the NRG Oncology network (a nonprofit research organization formed to conduct oncologic clinical research) was conducted to learn about recruitment of participants from minority/underserved populations. The survey response rate was 34.9 percent. The most effective methods reported for recruiting minority/underserved participants were patient navigators (44.4 percent) and translators (38.9 percent). All institutions reported using a mechanism...

This case study examines how the use of community engagement principles and approaches enhanced clinical trial recruitment and retention. The Meharry Vanderbilt Community Engaged Research Core (CERC), which facilitates community involvement in clinical and translational research, was consulted to enhance participation of African-American women in a clinical trial. CERC's key recommendations included: 1) convene a Community Engagement Studio, 2) redesign the recruitment advertisement, 3) simplify...

A 2-minute video features Dr. Griffin P. Rodgers, director of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), as he explains the importance of participating in clinical trials.

This 58-page document provides guidance for engaging stakeholders in reviewing and providing feedback on research questions before a project is implemented.

"Faster Together, Enhancing the Recruitment of Minorities in Clinical Trials" is a free online course that aims to teach people how to enhance the recruitment of people from racial and ethnic minorities into clinical trials. Key topics include the importance of diversity in clinical trials, barriers and facilitators to participation in clinical research, community engagement, effective communication, educating about clinical trials, provider outreach, effective prescreening and enrollment...

Here is a feed of all of the Alzheimer's Disease Centers tweets: Alzheimer's Disease Centers

NIA has created four video stories profiling participants in Alzheimer’s disease clinical trials. These videos feature participants from different walks of life who discuss what motivates them and how research staff support them to participate in studies and trials. The videos are intended to be shared as part of engagement and recruitment efforts for clinical studies. Each video was made with a specific audience in mind: Will’s Story—When both of Will’s parents developed dementia, he and his...

This NIA-produced planning guide for investigators, study coordinators, recruitment communications staff, and others involved in clinical research outlines strategies for improving community-based research participation.

This review examined 20 studies to identify successful community-engaged interventions that included healthcare providers as a key strategy in addressing barriers to clinical trial enrollment of underrepresented patients. Of the studies, 9 addressed cancer clinical trials and 11 addressed trials related to chronic medical conditions, including diabetes, hypertension management, and chronic kidney disease. The key strategies employed were categorized according to their presumed impact on barriers...

This article explores strategies to improve participation in cognitive aging research by older adults, particularly minority older adults. The cultural aspects of cognitive aging are examined, especially the role of stigma and stereotype threat. The perceptions of cognitive aging of African American and Hispanic older adults are also described. Specific strategies are presented that have been successfully implemented to improve recruitment and retention in research targeting minority older...

The current state of the literature on recruitment and retention strategies in clinical studies of low-income and minority populations was assessed in a review of 165 studies published in English between 2004 and 2014. Data extracted included information on the study type (descriptive or analytical), study design, study focus (recruitment, retention, or both recruitment and retention), health outcome, specific minority group, special population or age group, whether specific recruitment...

A sample of 304 African-American participants from the Washington, D.C., metropolitan area completed a survey evaluating beliefs about medical research and preferred research study methods. Results showed 90 percent believed that medical research was necessary and assists in finding a cure for a disease. Most respondents expressed a preference for participating in research related to issues with which they were familiar (e.g., diabetes or hypertension) or for working with researchers of a...

In-depth, semi-structured, telephone interviews were conducted with 31 research investigators experienced with minority populations, to explore their perspectives regarding how their own racial and ethnic background influenced their ability to recruit minorities. The analysis addressed the benefits and potential risks of racial concordance ("race-matching") in research recruitment (i.e., it is not a "magic pill"), and the importance investigators themselves placed on "being really connected" and...

Researchers surveyed 1,643 participants to investigate potential motivators, barriers, and facilitators to participation in research that tests a new drug or device. Participants were Caucasian, African American, Hispanic, multiracial, and "other" minorities. Motivators were measured on a scale that ranged from "no influence" (0) to "most influence" (4). Significant differences by race were found for five out of 10 motivating factors. "Risk of unknown side-effects" was the greatest barrier for...

This article synthesized findings from health research studies that evaluated the cost and effectiveness of different recruitment strategies to inform investigators on designing cost-efficient clinical trials. Researchers identified 10 randomized studies that compared recruitment strategies, including monetary incentives (cash or prize), direct contact (letters or telephone call), and medical referral strategies. Only two of the 10 studies compared strategies for recruiting participants to...

The authors propose EER a systematic approach to research participant recruitment so as to address the inadequate recruitment of underserved populations The guideline is referred to by the acronym EERC, for evaluate, engage, reflect, and carefully match. These terms stand for: 1) Evaluate the composition of the research team, 2) Engage fully with the community by working with key informants and cultural insiders, 3) Reflect the unique cultural characteristics of the community in the research...

How professional recruiters approach patients is a critical determinant of enrollment into research studies and clinical trials. Findings indicate that recruiters use several verbal strategies in the communication process, including translating study information (such as simplifying, using examples, and substituting specific difficult or problematic words), using linguistic reframing or metaphors, balancing discussions of research participation risks with benefits, and encouraging potential...

In this prospective cohort study, 204 adults were invited to join an online survey to assess the likelihood of their participation in clinical research, depending on how the term "clinical research" was defined. Both short and extended definitions were used; the five short definitions were: clinical trial, clinical study, health-related research study, community participatory study, and quality improvement study. The likelihood of participation in clinical research was the lowest when "clinical...

This reviewed examined 15 articles to identify challenges and strategies pertaining to recruitment and retention of frail older adults in research studies. Lack of perceived benefit, distrust of research staff, poor health, and mobility problems were identified as common challenges. Common strategies used were to establish a partnership with staff that participants knew and trusted and to be flexible about the time and place of the study. Few studies performed analyses to compare the impact of...

A telephone survey of 511 people in one Southern state explored the communication sources and perceived effective communication channels and strategies through which African Americans and White individuals receive clinical trial information.

Recommendations and guidelines to increase the participation of minorities in health-related research typically pertain to research in clinical or laboratory contexts. This article summarizes community-engaged outreach efforts that can be translated into usable strategies for health education research teams seeking to diversify the pool of research participants. The article provides an overview of the various components of a research endeavor that may influence minority participation in health...

This article describes the challenges encountered in recruiting, into five research studies, Mexican American participants from community settings. Culturally relevant strategies used to recruit are also described. The most effective recruitment strategies reflected the common cultural values of personalismo, simpátia, confianza, respeto, and familismo. García AA, Zuñiga JA, Lagon C. A personal touch: The most important strategy for recruiting Latino research participants. Journal of...

A telephone survey was conducted with rural and urban residents in South Carolina to examine potential barriers to participation in clinical trials. The survey explored structural and procedural barriers (e.g., limited accessibility) and cognitive and psychological barriers (e.g., fear, distrust). Findings indicated that there were no significant differences between rural and urban residents in their willingness to participate in a clinical trial. However, rural residents were more likely to...

This paper discusses a variety of methods that were successful in exceeding target recruitment and retention goals in a randomized clinical trial of hearing protector use among farm operators. Recruitment and retention strategies were: based on a philosophy of mutually beneficial engagement in the research process, culturally appropriate, tailored to the unique needs of partnering agencies, and developed and refined in a cyclical and iterative process. These approaches may result in enhanced...

In this study, researchers evaluated the perceived success of recruitment and retention protocols for Native Hawaiian/Pacific Islander/Filipino adult populations. Focus groups and questionnaires were used to identify themes related to facilitators and deterrents to participation in clinical trials in these populations. Responses to animated videos and vignettes with actors regarding clinical research participation were analyzed. Researchers found that successful recruitment and retention...

This study explored why participation in clinical trials is lower in the African American population. The authors examined two sets of potential barriers: structural/procedural (limited accessibility, lack of awareness, doctors not discussing clinical trial options, and lack of health insurance) and cognitive/psychological (lack of subjective and factual knowledge, misperceptions, distrust, fear, and perceived risk). The authors found that lack of subjective knowledge and perceived risk were...

To identify successful recruitment strategies, challenges, and best practices for researchers to engage African American communities in clinical studies, researchers reviewed studies conducted from 2001 to 2012 at an inner-city research center. They contacted the study coordinators to obtain data on recruitment and retention strategies, challenges, and dropout rates, and also interviewed 25 study coordinators on challenges and strategies. Successful recruitment and retention strategies included...

In this review, researchers summarize some of the available methods to improve Alzheimer’s disease research recruitment, the available literature to support or refute these strategies, and experiences at the Alzheimer’s Disease Research Centers. This article also addresses the application of community-based participatory research principles and the use of participant registries to enhance research enrollment and increase diversity of research samples. Grill JD, Galvin JE. Facilitating Alzheimer...

In this U.K.-based study, researchers sought to assess the impact on clinical trial recruitment of an incentive of £100 and whether the offer of this payment attracted more elderly and socially deprived patients. The £100 offer led to small but significant improvements in both patient response to a clinical trial invitation letter and in the number of patients who consented to be screened. Yet, the payment did not attract more elderly or socially deprived patients. Jennings CG, MacDonald TM, Wei...

Online advertising is a new frontier in research recruitment and Google Adwords is one method of online advertising. However, only a handful of studies have described its cost and effectiveness and none have focused on older adults. This study created a Google Adwords campaign to recruit family caregivers of people with dementia. The study found that the ads were viewed more than 450,000 times in a 6-week period, but only 49 surveys were completed, at a cost of $122 per survey. The paper...

This study examined recruitment and retention strategies used among a group of older community-dwelling stroke survivors for a randomized clinical trial on exercise. A total of 393 referrals were received, 233 persons were screened, and 145 stroke survivors were enrolled in the study. During 3 years of recruitment, this study achieved 97 percent of the enrollment target and enrolled 62 percent of those screened. Of those enrolled, 21.4 percent were recruited through paid advertising and 78.6...

This study assessed the feasibility, benefits, and challenges of recruiting for research studies related to consumer health information technology by utilizing Facebook.

This study tested different types of appeals to participate in research studies. A random sample of 2,014 caregiving units (composed of an older adult, a family member, and a home care worker) were obtained from a list of Israeli long-term care insurance beneficiaries. Participants received either a formal and succinctly phrased letter followed by a recruitment phone call; the formal letter, but a revised, more personal recruitment phone call; or a revised letter and a revised phone call. The...

A two-sided informational card that provides seven frequently asked questions about brain donation and a testimonial from a Chinese-American study partner.

This toolkit, developed by the National Center for Advancing Translational Sciences at the National Institutes of Health, provides patient groups with the tools needed to advance medical research. Tools are developed for and by patient groups in concert with their academic, government, industry, and advocacy partners, and are designed to ensure patients are engaged as essential partners from beginning to end of the research and development process. Resources cover topics such as the principles...

This online toolbox offers resources from Clinical & Translational Science Awards (CTSA) programs, and their community health partners, to help investigators across the life cycle of their projects.

This trifold brochure describes the UC Irvine Institute for Memory Impairments and Neurological Disorders (UCI MIND) and its mission. It describes innovations at the Institute, including the development of novel mouse models for Alzheimer's research and the establishment of an Induced Pluripotent Stem Cell (iPS) Core. The brochure also includes statistics on Alzheimer's disease in Orange County, CA. Contact information is provided for giving opportunities, research opportunities, and education...

Public-directed page of the NIH NeuroBioBank providing information on donation and answering frequently asked questions.

This trifold brochure created by the Johns Hopkins Alzheimer’s Disease Research Center provides information on the Memory and Aging Study Brain Donation Program and the importance of donation. The brochure includes information on making the decision, joining the program, and making arrangements. It also features participant profiles and provides contact information.

This five-page document presents a standardized retention plan for prevention, symptomatic, and observational trials conducted at the Center for Alzheimer Research and Treatment (CART), Brigham and Women’s Hospital and Harvard Medical School. The plan describes strategy and tactics designed to keep patients enrolled in clinical trials, and from discontinuing their participation or dropping out. It covers pre-initiation, study start-up, and study initiation phases.

The Sanders-Brown Center on Aging at the University of Kentucky created a trifold brochure for a brain donation program related to the Down Syndrome—Aging & Alzheimer's Disease Study. The brochure includes information on why brain donation is important, whether donation will affect funeral arrangements, the purpose of the study, what's involved in autopsy, and who can donate. It also includes contact information.

The MADRC/CART Volunteer Program is made up of community members who would like to support the work of the Massachusetts Alzheimer’s Disease Research Center (MADRC). Volunteers provide support at outreach events, speak to community members, review materials, provide feedback on programs, help assemble program materials, and participate in other activities. A two-page, full-color flyer is used to recruit volunteers.

The Research Ambassador Program is for current and past participants in research, and their caregivers, at the Massachusetts Alzheimer’s Disease Research Center (MADRC) and the Center for Alzheimer Research and Treatment (CART). Ambassadors are willing to serve as educators and mentors to others interested in learning about their experience as study participants. Ambassadors talk about their experience in studies, help others understand how research participation has fit into their lives, and...

The Rapid Diagnostic Clinic, part of the Center for Brain/Mind Medicine at Brigham and Women’s Hospital, provides access to earlier diagnosis for patients interested in research participation at the Center for Alzheimer Research and Treatment (CART) and supports physician partners whose patients are in need of diagnostic assistance. Two-sided flyers provide information for providers and patients, respectively.

An illustrated, two-page, full-color flyer provides information on MUNDOS, a program at the Massachusetts General Hospital Psychology Assessment Center. MUNDOS provides neuropsychological services and enriched training opportunities for clinical psychology students who are interested in multicultural neuropsychology. The program serves individuals with diverse cultural and linguistic backgrounds, including individuals who are monolingual and bilingual Spanish/English speakers.

The Massachusetts Alzheimer’s Disease Research Center (MADRC) and the Center for Alzheimer Research and Treatment (CART) maintain a roster of community educators and MADRC/CART faculty and staff who are available to make educational presentations. Customized educational programs can be arranged. Programs offered in Boston and surround communities cover such topics as normal versus abnormal memory in aging, the importance of early diagnosis of Alzheimer’s and related dementias, prevention...

The Massachusetts Alzheimer’s Disease Research Center (MADRC) and the Center for Alzheimer Research and Treatment (CART) are supported by a community of collaborators who are aligned in the fight to educate about and combat Alzheimer’s disease and related dementias. The collaborating team holds a monthly Operations Meeting to discuss outreach and recruitment activities and review how the staff at MADRC/CART can support work happening in the community. Members may attend in-person or by phone to...

The Massachusetts Alzheimer’s Disease Research Center (MADRC) and the Center for Alzheimer Research and Treatment (CART) develop “partnerships in care” with professionals to support patients and families in receiving more timely access to diagnosis of mild cognitive impairment or early Alzheimer’s disease and for care, treatment, and research. Supports that MADRC/CART offers to clinical partners include neurological and neuropsychological testing support, the Rapid Diagnostic Clinic Program...

The Massachusetts Alzheimer’s Disease Research Center (MADRC) and the Center for Alzheimer Research and Treatment (CART) are supported by a Community Advisory Board. Leaders from the community serve as advisors on the actions needed to increase participation, particularly of underrepresented groups, in MADRC/CART clinical research programs. Board members advise on collaborations, speak at community outreach presentations about the need for diverse representation, review materials created for...

This paper describes the barriers and challenges experienced by a research team in recruiting early-stage dementia caregiving dyads into research studies. Among other factors, the team found that recruitment and enrollment success depended on having well-trained recruitment staff who are knowledgeable about the study and have experience working with older adults, and more specifically, persons with dementia. Szabo SM, Whitlatch CJ, Orsulic-JEras S, et al. Recruitment challenges and strategies...

Individuals engaged in Alzheimer’s disease prevention and treatment clinical trials were surveyed about their motivation to participate in research. Important motivators were the potential to help themselves or a loved one and the potential to help others in the future. Relatively few respondents were motivated by free health care, monetary rewards, or the potential to make others happy. Bardach SH, Holmes SD, Jicha GA. Motivators for Alzheimer's disease clinical trial participation. Aging...

This article reported on challenges and strategies related to recruitment of minority breast cancer survivors, particularly those with lymphedema, into the WISER Survivor Trial. The authors attributed successful recruitment to several factors, including diversity and cultural appropriateness of study staff; tracking the results of multiple recruitment methods and abandoning the ones with low yield; using active (e.g., mailings) and passive (e.g., printed materials and website) recruitment...

This study qualitatively examined perceptions of advanced stage lung cancer patients participating in a lung cancer Rapid Tissue Donation Program and their next of kin and physicians. Through interviews, the authors found that the majority of patients joined the program to give back to research. Patients also discussed their decision to participate with family members and desire for family to receive information about the use of the tissue after their death. All participating next of kin were...

This article describes effective recruitment methods for clinical lung cancer screening programs, with a focus on addressing barriers to screening for socioeconomically disadvantaged communities. Lee C. Screening for lung cancer: Effective recruitment methods. American Journal of Roentgenology 2018;210(3):514-517.

Historically, African Americans have been disproportionately underrepresented in clinical trials. To address this gap, the authors analyzed recruitment data to identify the most effective strategies for enrolling older African Americans in clinical trials. Data used in these analyses were obtained from 3,266 potential volunteers, ages 50 or older, who completed a Mini-Mental State Examination as part of recruitment and screening for various clinical studies on Alzheimer's disease. The findings...

This article highlights the challenges to recruiting people with dementia to studies and identifies strategies that nurses, in particular nurse researchers, can use for overcoming them. Although the focus is on the role of nurses, much of the discussion can apply to other health professionals. Recruitment challenges discussed include a lack of awareness about research participation opportunities and a suitable study partner. Nurses can play a valuable part by personalizing the recruitment...

This article outlines problems relevant to patient engagement in Alzheimer's clinical research, including difficulties in recruitment and retention, ensuring the recruited sample is representative of the general Alzheimer's population, the burden of screening failures, and new challenges related to recruiting a preclinical population. The authors described the Models of Patient Engagement for Alzheimer's Disease (MOPEAD) project, a public-private partnership promoted by the Innovative Medicine...

Many research studies report difficulties recruiting enough participants, adding to the time and cost of the study and potentially jeopardizing the generalizability of findings. This article reported on recruitment strategies used in nine dementia-related studies conducted in Australia. Articles, notices, or advertisements in targeted specialist newsletters were the most cost-effective method of recruitment. Online and social media were low-cost but not reliably effective. Beattie E, Fielding E...

This study explored whether community health fair attendees who engaged in a brief cognitive screen were more likely to enroll in research than attendees who did not complete the screen. Of 483 health fair attendees who were tracked for 1 year after the event, 364 attendees expressed interest in research and 126 completed a brief cognitive screen. Screen completers had a 2.5-fold increase in eligibility for clinical studies/trials compared with non-screen completers. However, when limited only...

The Harvard Brain Tissue Resource Center created a four-page brochure focused on different religious perspectives of tissue donation and postmortem human brain research. The brochure seeks to address the question that many potential donors have: Is the decision to support essential research by donating brain tissue after death compatible with my religious beliefs? The information covers Protestantism, Catholicism, Judaism, Greek Orthodox, Islam, Buddhism, Hinduism, Jehovah's Witness, and...

This handout, created by Dementia Australia, provides information to help people make a decision about donating their brain or a loved one’s brain for research and how to go about it. The handout features a series of frequently asked questions covering what brain donation is, how to become a donor, and the process of donation.

The aim of this paper was to explore the impact research participant involvement had within the PREVENT and the European Prevention of Alzheimer's Dementia (EPAD) projects. The authors reported the experiences of involving research participants as collaborators in prospective cohort studies exploring early changes in the brain as pathways toward and risks for dementia. They used minutes and feedback from members of the panel and steering committee to understand the experience and impact on the...

Brains for Dementia Research is a planned brain donation project that involved lay input in its conception, design, and implementation. Lay representatives served on the management and tissue banking committees, spoke at recruitment and team events, and reviewed all public- and participant-facing communications. This involvement has aided recruitment and retention through a strong partnership between professional staff and the community. Ensuring good communication between professionals and lay...

The aim of this paper is to describe a person-centered and culturally sensitive approach to working with minority ethnic communities, involving carers, people living with dementia, members of the public and carer support workers, as used in the Caregiving HOPE study. The involvement of these experts was influenced by each individual's needs and desires, which changed over the course of the study. The approach to clinical research design and involvement had a significant impact on successful...

This study examined the roles of race and culture in the attitudes and beliefs of African Americans about participating in clinical research. Five focus groups were conducted with 44 African-American men and women (aged 50 and over) in a western U.S. state. Participants were asked scripted questions regarding their knowledge and beliefs about Alzheimer's disease and their feelings about participating in clinical research. Themes that emerged were: experiences of unequal treatment and racism...

Researchers' use of Internet-based surveys and recruitment strategies has increased, but there is little knowledge about their use in different age groups of former dementia caregivers. This analysis describes the use of Internet-based recruitment in young and middle-aged (age 18-64), young-old (age 65-74), and older-old (age 75 and older) former dementia caregivers. A four-step recruitment strategy encompassing a combination of Internet-based and non-Internet-based recruitment strategies was...

High rates of attrition in longitudinal studies of Alzheimer's disease and related dementias may cause researchers to underestimate dementia prevalence and skew the characterization of the disease, comprising the generalizability of the results. To explore predictors of attrition, this study examined the National Alzheimer's Coordinating Center (NACC) Uniform Data Set, a repository of observations of older adults spanning 11 years. Four samples were examined. The researchers found that worsening...

Engaging patients in registry development can increase registries' long-term success and help retain patients who enroll in them. This study involved two semi-structured focus groups with 18 people with dementia and their family members to get their perspectives on registry participation experiences, barriers and facilitators to participation, and potential avenues for improvement of registry processes. The main themes identified included altruistic motives regarding registry participation and...

Find clinical trials and studies related to Alzheimer's, other dementias, mild cognitive impairment, and caregiving in this searchable database.

Strengthening Translational Research in Diverse Enrollment (STRIDE) is a collaborative project focused on developing innovative approaches to enhancing informed consent procedures, with a goal of improving research literacy among underserved populations.

Researchers in this study conducted 19 focus groups and nine interviews to identify recruitment barriers, motivators, and strategies to help increase access to and participation in clinical trials in rural and urban communities. More than 200 African-American and white men and women ages 21 and over participated in the focus groups. Researchers found that although similar barriers, motivators, and strategies were reported by urban and rural groups, perceptions regarding their importance varied...

This article reviews the evidence that supports strategies to recruit and retain rural patients in behavioral intervention trials aimed at promoting self-management of cardiovascular disease and its risk factors. To overcome community-, research- and patient-related barriers (such as lack of transportation and remote distances), the investigators of the reviewed studies developed and implemented strategies to promote community engagement with research, improve the research process, increase...

In this paper, the authors reviewed 44 articles published from January 2000 to December 2011 to identify the experienced or perceived barriers and facilitators to health research participation for major U.S. racial/ethnic minority populations. Shared barriers to participation included mistrust and lack of access to information. Despite different expressions of mistrust, all groups represented in these studies were willing to participate for altruistic reasons embedded in cultural and community...

This review examined 26 studies, published between 1995 and 2012, that reported on recruitment of persons of different cultural and ethnic backgrounds. Authors extracted data on the type of recruitment strategies used and overall reported effectiveness of each strategy. They then developed a list of effective strategies in recruiting persons of diverse ethnic and cultural backgrounds. Strategies included both proactive recruitment (e.g., face-to-face meetings) and reactive recruitment (e.g...

This study evaluated the yield and cost of three recruitment strategies—direct mail, newspaper advertisements, and community outreach—for identifying and enrolling dementia caregivers into a trial testing a nonpharmacologic approach to enhancing quality of life of individuals with dementia and their caregivers. A total of 237 dyads enrolled. The total cost of recruitment was $154 per dyad, with direct mail found to be the most effective and least costly method, at $63 per dyad. That compared...

Researchers presented two innovative, testable methods for resolving the challenge of increasing older African Americans' participation in research studies. A total of 62 older African Americans were randomized to treatment and control conditions of a reminiscence intervention. Sensitivity to an African-American cultural form of respect for elders (recognition of worth and dignity) and intersections between the lived experience of the researcher and participants helped dispel this population's...

Directors of practice-based research networks (PBRNs) across the United States were surveyed to assess their use of community engagement approaches to recruit and retain participants from their local communities, especially racial/ethnic communities. Survey respondents indicated whether their research network planned for, implemented, and had capacity for activities that engage clinic and community partners in seven recommended strategies organized into study phases, called the cycle of trust...

This study used Community Partnered Participatory Research (CPPR) to address low participation of racial/ethnic minorities in medical research and the lack of trust between underrepresented communities and researchers. Residents of a South Los Angeles neighborhood were exposed to research recruitment strategies: referral by word-of-mouth, community agencies, direct marketing, and study participants. Study completion rates varied by recruitment method: referral by community agencies (88.7%)...

Mistrust of medical research is an important barrier hindering recruitment in African-American communities. In this study, researchers conducted in-depth, face-to-face interviews with leaders from four African-American churches about their experience with and barriers to hospice and palliative care research. Mistrust based on experience with previous researchers emerged as a common theme. Findings suggested that researchers who wish to conduct successful studies in African-American religious...

The goals of the Arizona Alzheimer's Registry were to increase awareness of Alzheimer's disease research among adults age 18 and older and to accelerate enrollment into clinical studies sponsored by the Arizona Alzheimer's Consortium. Participation was by open invitation. Earned media was the most effective recruitment strategy. More than 1,000 people consented and underwent an initial cognitive screening. The Registry created an infrastructure and process to screen and refer a high volume of...

The aim of this study was to describe and compare the time and monetary costs associated with recruiting and interviewing a diverse sample of older adults living in south Florida. Men and women age 60 and older from four ethnic groups—African American, Afro Caribbean, Hispanic American, and European American—were recruited to participate in a longitudinal study of healthy aging. Costs for study activities (including recruitment, scheduling sessions, interviewing, file scoring, log updating...

To overcome the barriers of recruiting African Americans into health research studies, researchers tested an engagement strategy that used volunteer research registries and community review boards to link registrants to studies. The aims of this Community Research Outreach Workers' Network (CROWN) were to 1) create a community outreach-generated registry of African Americans interested in participating in health research and 2) develop a community research review board to advise investigators on...

This article describes the challenge of recruiting to clinical trials and studies healthy volunteers without symptoms of Alzheimer's disease, especially African Americans. To find a solution, the authors used a community engagement approach to create a registry of 2,311 research-ready, healthy adult volunteers who reflected an ethnically diverse local community in North Carolina. The approach had varying levels of success in establishing a large, diverse pool of individuals who were interested...

The researchers tested whether targeted recruitment letters acknowledging diabetes health disparities and health risks specific to recipients' racial/ethnic group improved two metrics of trial participation: willingness to be screened and enrollment. This experiment was efficiently nested within a randomized clinical trial examining a preventive lifestyle intervention among pregnant women at high risk for diabetes. Participants received either a targeted recruitment letter with health risk...

This study sought to develop and test a community-developed, faith-based intervention and evaluate its potential to increase the number of older African Americans in clinical research. The authors worked with six churches to enroll at least 210 people. Those at the intervention group received three educational sessions on the role of clinical trials in addressing health disparity topics, and those in the comparison group completed surveys at the same time. All participants received ongoing...

A multipronged approach led to the successful recruitment of 303 diverse, community-residing elders with memory impairment for an intervention trial. Key factors for success included using a range of evidence-supported outreach strategies, forming key strategic community partnerships, seeking regular stakeholder input through all research phases, and obtaining "buy-in" from community stakeholders by aligning study objectives with perceived unmet community needs. Most referrals came from letters...

This editorial pertains to African American caregivers of people with dementia, specifically those with type 2 diabetes. The author reviews barriers to recruitment for this population and the experience of church-based recruiting of caregivers age 55 and older with diabetes who also care for a person with dementia. Important factors to success included a respected gatekeeper and relationship building. Barriers included the religious interpretation of dementia behaviors that produced stigma among...

This study evaluated the ability of a registry of research volunteers to retain African-American older adults and to explore the demographic and health factors associated with retention. Researchers analyzed data for 1,730 adults enrolled in the Healthier Black Elders Center (HBEC) research registry. They found an increased likelihood of retention was associated with employment, being referred to research studies, a higher number of medical conditions, and more follow-up contacts. A decreased...

A clinical trial evaluated the effectiveness of a church-based educational intervention aimed at improving African Americans' participation in clinical trials. A total of 221 subjects age 50 and older were recruited from six predominantly African American churches in the Atlanta area. Some subjects attended three educational sessions, while others (the controls) completed questionnaires. Subjects' intention to join a clinical trial was measured at baseline and after 3 and 6 months. Researchers...

The engagement of lay stakeholders, such as community advisory boards (CABs), has the potential to increase recruitment and retention of underrepresented groups by providing a structure for gathering feedback on research plans and materials. However, many CABs recruit prominent stakeholders who are connected to or comfortable with research and academia and thus may not accurately represent all underrepresented populations. Researchers developed a partnership between a university nursing school...

Many strategies to increase racial/ethnic minority recruitment focus on common diseases such as hypertension, while relatively few focus on less common conditions, often conducted in specialty clinics and dependent on physician referrals. This article presents the design of RECRUIT (Randomized Recruitment Intervention Trial), a national, randomized trial that examined the effectiveness of a trust-based continuous quality improvement intervention to increase minority recruitment into clinical...

In this study, researchers explored the use of a community-based oral health initiative to assist in recruitment of racial and ethnic minorities to focus groups for older adults. The process involved planning a recruitment strategy, engaging the individuals involved in its implementation (senior center attendees, program staff, and directors), executing the recruitment plan, and reflecting on the process of implementation. Targets for recruitment were met, an outcome attributed to the...

This study examined the factors that influence participation in clinical trials by older African Americans, including social support, transportation access, and physical impediments. Researchers surveyed 221 participants who were recruited from local African American churches. They found that increased intent to join a trial was associated with greater transportation mobility, social ability, and daily living ability. Among adults age 65 and older, those with lower levels of support during a...

This study examined the feasibility of recruiting minority and underserved adults from a community research registry. Study staff attended health fairs to invite adults to join the registry, then examined rates of successful contact, scheduling, and participation for studies that used the registry. Non‐Hispanic whites were less likely than Hispanics to be interested in joining a research study, but among those scheduling an appointment, participation did not differ by race/ethnicity. The authors...

One challenge in cognitive-decline prevention trials is sample recruitment bias—willing volunteers could be socially active, in relatively good health, and have high educational levels and cognitive function, which could reduce the generalizability of study results and mask trial effects. The authors developed a randomized, controlled trial to examine whether conversation-based cognitive stimulation delivered through personal computers, a webcam, and the Internet would have a positive effect on...

The sponsors of the PEARLS (Program to Encourage Active, Rewarding Lives) study, a home-based depression-care management program for elders, partnered with three social service organizations in the Seattle area to identify hard-to-reach populations, barriers to reaching them, and strategies for improving recruitment and retention. Based on semistructured interviews with study staff and former PEARLS participants, several themes emerged, including trust, cultural appropriateness, meet them where...

The authors describe strategies used to recruit older adults to a clinical trial of a behavioral intervention to improve adherence to taking antihypertensive medication. Four themes are explored: accessing an appropriate population, communication and trust-building, providing comfort and security, and expressing gratitude. Recruitment success was linked to cultivating relationships with community-based organizations, face-to-face contact with potential study participants, and providing a service...

In this article, researchers explored two different approaches during a 6-month process of recruiting 212 individuals to an observational study. For the first 3 months, prospective participants received a phone call in which a member of the research team explained the study and invited them to participate. These participants received an information sheet by mail, and the study was re-addressed at the patient’s clinic appointment, at which the patient was formally invited to participate. In the...

This articles describes the barriers and challenges faced in recruiting nursing home residents to a pilot study and proposes a new approach to achieve more successful recruitment of these types of participants. A carefully planned recruitment strategy must consider barriers such as mistrust and disruption to routines, the authors concluded. Researchers must also strive for connections that create positive relationships with care homes. Tzouvara V, Papadopoulos C, Randhawa G. Lessons learned from...

Recruiting minorities can be challenging for clinical researchers. This study examined the recruitment strategies used by "comprehensive" versus "traditional" researchers. Results of an online survey, conducted in 2010, found that "comprehensive" researchers used more, and more diverse and active, recruitment strategies, while "traditional" researchers used fewer and more passive strategies. The authors found that comprehensive researchers were more likely than traditional ones to 1) report...

How have the perceptions of clinical research among the public and clinical trial participants evolved over time? This article reviews the results of a global online survey of 12,427 individuals (representing 68 countries and including 2,194 clinical trial participants) conducted by the Center for Information and Study on Clinical Research Participation. The respondents understood the importance of clinical research and believed it was safe but had limited understanding of the clinical research...

While recruiting for the Anti-Amyloid Treatment in Asymptomatic Disease (A4) Trial, investigators compared one-on-one with small-group recruitment sessions. Of the 127 potential participants, most chose small-group sessions. Researchers found that small-group sessions yielded a recruitment rate of 90 percent, while one-on-one sessions led to a 67 percent recruitment rate. In addition, small-group sessions contributed to significantly shorter median time for consent processes (20 versus 60...

This editorial in Nature discusses how thanking participants in clinical trials is a simple but effective strategy for making them feel like partners in research.

This article describes how clinical trials participants are using social media to communicate with each other, which can disrupt the usual flow of information.

An annual event billed as “the largest Chinese dementia-specific educational conference in the nation” and conducted in Chinese (Mandarin) is targeted to concerned community members, healthcare professionals, and families affected by Alzheimer’s disease and related dementia. The forum is cosponsored by the University of California Memory and Aging Center and other organizations. At the 2017 event, held on a Saturday afternoon in the Intel Auditorium in Santa Clara, CA, experts provided updates...

The Chinese Outreach Program at the UCSF Memory and Aging Center is targeted to the Chinese-American community in the Bay Area in order to improve knowledge about dementia in the community and to promote enrollment of Chinese Americans into studies conducted by the Alzheimer's Disease Research Center. The center maintains a 14-page document on its internal wiki called MACipedia that outlines Chinese outreach initiatives and procedures. The center has also produced a two-page flyer for use at...

The Neurodegenerative Disease Brain Bank at the UCSF Memory and Aging Center was established in 2008 and serves as a repository for nervous system tissue donated for research purposes. This webpage explains the benefits of brain donation, who is eligible, and how the tissue is used.

A webpage of the Community Outreach Program at the UCSF Memory and Aging Center, providing information and resources.

UCSF’s Memory and Aging YouTube Channel covers topics on research, researchers, caregiving, and how the brain works.

This annual publication includes profiles of study participants, study partners, and research professionals; articles about topics related to Alzheimer's such as healthy aging and elder abuse; feature stories on current clinical trials; staff news; articles on the importance of African-American participation in research and brain donation; and a list of recent financial supporters of the Center's Alzheimer's research. InSight was a newsletter until 2016, when it was reformatted as a magazine.

This article describes the results of efforts to recruit Asian Americans into longitudinal research on cognitive decline in aging. Recruitment strategies included clinics for assessment of cognitive impairment at the University of California, San Francisco campus and San Francisco’s Chinatown, lectures to local healthcare providers and community members, participation in community events, and publications in mass media. Over 200 Chinese patients were evaluated and 125 participants enrolled...

This paper reports on the implementation, development, and early findings of the Care Ecosystem, a supportive care intervention for patients with dementia and their caregivers. The objective was to develop and test a scalable model of dementia specialty care that complements primary care with additional caregiver support and education; medication consultation; and support in planning for future medical, financial, and legal decisions. Care is delivered via the phone and web by unlicensed care...

This annual symposium is sponsored by the University of Kentucky Sanders-Brown Center on Aging and named for former Center director William Markesbery. The daylong scientific meeting is followed by a half-day community session to which the public is invited free of charge, with breakfast provided. An “Ask the Experts” panel is a popular component of the community session. In 2017, the scientific meeting had more than 160 attendees and the community session drew more than 650 people.

Produced between 2006 and 2015, the "Volunteer News" newsletter of the University of Kentucky Alzheimer’s Disease Center (UK-ADC) featured news about active studies, summaries of research findings and presentations, Center staff, and upcoming events. Issues also included brain teasers.

The website of the University of Kansas (KU) Alzheimer’s Disease Center includes an iframe, “Currently Enrolling Alzheimer’s Disease Studies,” which lists basic information about currently recruiting studies and gives contact information (phone number, website) for consumers and medical providers if they are interested in following up. Studies are categorized (e.g., observational studies, prevention studies, treatment studies). Each description includes the study’s title, type of study...

This toolkit is designed to help organizations educate their constituencies on the importance of having members of minority populations participate in clinical trials.

This webinar series covers regulatory documentation for clinical trials, informed consent, good clinical practice, and many other topics.

The Accrual Quality Improvement Program (AQuIP) of the Division of Cancer Prevention, National Cancer Institute, produced "The AQuIP Toolkit" as a user-friendly library of recruitment resources. The toolkit includes a recruitment instruction manual, templates for recruitment materials, an image library, and references for additional information.

The National Cancer Institute's Division of Cancer Prevention (DCP) requires a study-specific Recruitment, Retention and Adherence (RRA) Plan for each DCP Consortia Early Phase Prevention Trial. The RRA Plan covers the “who, what, when and where” of the strategies planned for the period before study activation and during the course of the study. This fillable form provides an outline for investigators and RRA coordinators to follow for creating a study-specific plan. Note: To access this...

The Knight Alzheimer’s Disease Research Center (Knight ADRC) at Washington University in St. Louis held a workshop on issues surrounding recruitment of African-American participants into Alzheimer’s disease (AD) research studies. The workshop, titled “African American Participation in AD Research: Effective Strategies Workshop,” was held at Washington University on October 10, 2018.

The African American Advisory Board counsels the research team at the Knight Alzheimer’s Disease Research Center (Knight ADRC) at Washington University in St. Louis on cultural sensitivity and appropriate outreach strategies for encouraging greater African American participation in memory and aging studies. The board is made up of influential members of the St. Louis African American community and was established in 2000.

This trifold brochure from the Knight Alzheimer’s Disease Research Center (Knight ADRC) at Washington University in St. Louis is part of a group of materials for the Memory & Aging Project (MAP) research study. This particular brochure is targeted to the African American community in St. Louis. It covers some basics about memory loss and aging, warning signs of Alzheimer’s, and specific risk factors for African Americans. It also shares information about the Knight ADRC and its dedication to...

The purpose of this study was to evaluate older adults' receptiveness to participation in Alzheimer’s-related clinical trials, neuroimaging studies, and psychosocial investigations, and whether that receptiveness changes over time. Patients were surveyed about their willingness to be contacted regarding such research studies twice, 1 year apart. At baseline, most respondents were willing to be contacted; at year 2, 37 percent of respondents voiced different preferences. Researchers concluded...

This study examines how underrepresented older urban- and rural-dwelling individuals conceptualize participation in studies of cognitive impairment. Nine focus groups about the benefits of research participation were held with older adults from a community-based memory screening study. Results indicate that subjects viewed research participation as a way to address memory concerns and provide a benefit to society. The primary difference arising between rural and urban focus groups was that urban...

This article assesses the psychometric properties of the University of California, San Diego Brief Assessment of Capacity to Consent (UBACC) when used in individuals thinking about participating in Alzheimer’s disease research. The UBACC was administered to a sample of individuals with mild to cognitive impairment and a sample of healthy controls as part of a broader study to evaluate perceived burden of research participation. Researchers concluded that the UBACC shows promise when used to...

A colorful one-page flyer invites “four friends over 60” to visit the University of Pittsburgh Alzheimer’s Disease Research Center for 4 hours per year to fight Alzheimer’s disease. The flyer describes the components of a comprehensive evaluation participants will receive, which includes personalized feedback. A contact name and phone number are provided.

A one-page flyer invites potential volunteers to learn more about participating in a federally funded research study. It lists the free clinical services they will receive, perks such as free parking, and a promise of confidentiality. A contact name and phone number are given.

This three-part video series provides background on Alzheimer's disease, what cerebrospinal fluid is, what participants can expect during the collection procedure, and more.

This short news video from St. Louis, MO, focuses on the important role volunteers play in Alzheimer's research.

Center for Alzheimer Research and Treatment (CART) is part of Brigham and Women's Hospital in Boston, Massachussetts. These social media accounts promote CART memory studies for individuals with Alzheimer's Disease or Mild Cognitive Impairment.

The Memory & Aging Project (MAP) at Knight Alzheimer’s Disease Research Center (Knight ADRC) at Washington University in St. Louis was started in 1979 and studies intellectual functioning in persons as they age. The ADRC has a number of materials promoting this study, including: A full-color folded brochure that provides an introduction to MAP and the Knight ADRC and covers what to consider before volunteering. The brochure also includes an infographic about the ADRC and contact information. A...

The Penn Memory Center uses a Google Form for enlisting into its Brain Health Research Registry people age 60 and older and who have normal memory, mild cognitive impairment, or Alzheimer’s disease. Registry participants are contacted periodically with a list of research studies they can consider joining.

The Penn Memory Center conducted the Anti-Amyloid Treatment in Asymptomatic Alzheimer's (A4) Study. Although not currently recruiting, this 4-minute radio interview discusses the center's active recruitment of African-American participants.

The Penn Memory Center has created Web pages describing its open studies. Each page provides a link to a printable PDF with the same information: Aging Brain Cohort (ABC) Study Alzheimer’s Disease Neuroimaging Initiative 3 Study Longitudinal Early-onset Alzheimer’s Disease Study (LEADS) Medial Temporal Lobe (MTL) Study The PEGASUS Study (PDF 65.7 KB) REVEAL-SCAN Study Time Out Respite Care Research Study

“Take a Closer Look” is a 12-page guide for participants in the REVEAL-SCAN Study and their study partners. Topics covered are Alzheimer’s disease dementia, amyloid, study steps and procedures including cheek swab and PET scan, and benefits and risks for participants. A one-page flyer on the SCAN study is also available.

"Dance for Health: Active Mind, Active Body" is a Penn Memory Center program to promote healthy living for older adults through exercising, socializing, and healthy eating. The program involves weekly dance sessions and monthly intergenerational activities with students from an area high school. At the beginning and end of each 3-month session, participants are asked to complete a survey to measure well-being and satisfaction with their everyday lives. The program is held at the Ralston Center...

Penn Memory Center hosts an annual Research Partner Thank You Breakfast for all research participants and their study partners. Leadership, clinicians, and staff of the University of Pennsylvania Alzheimer’s Disease Center and Penn Memory Center attend the breakfast, and a short program provides updates on the studies and programs. The 2017 breakfast was held at the Inn at Penn in Philadelphia.

The purpose of the Advisory Board is to provide the Penn Memory Center/Penn Healthy Brain Research Center with candid guidance, advice, and critiques. Its goal is to ensure that "our research and dissemination efforts reflect our region’s multicultural makeup and that we raise awareness about Alzheimer’s disease and brain health in the communities of Philadelphia, with a particular focus on the African American community." Board members are expected to: Know and understand the goal and mission...

This 11-slide presentation entitled, "Developing, Implementing, and Monitoring Penn Memory Center’s Multicultural Recruitment and Retention with a Focus on African American Participants," provides information about the Penn Memory Center and its efforts to increase study enrollment of residents in the Philadelphia area who are African American.

This 19-slide presentation was developed for use at community events in West Philadelphia, which has a large African-American population. The presentation covers the purpose of the Penn Memory Center, the difference between dementia and Alzheimer’s disease, what can be done to delay cognitive decline, the importance of Alzheimer’s research, Penn Memory Center’s involvement with the National Alzheimer’s Coordinating Center, and benefits for research participants. The content and photographs are...

This 40-page guide provides outreach strategies and resources for providers and coalitions to better support African Americans with end-of-life issues. Chapters are: Overview, African American Focus Group Findings, Strategies for Reaching Out to African American Communities, Model Outreach Programs and Initiatives, and Resources for African American Outreach. The guide was produced in 2008 by Caring Connections and the National Hospice and Palliative Care Organization.

The Penn Memory Center’s coordinator for diversity research composed a template for emails to be sent individually to community leaders in the African-American communities of Philadelphia. The message describes the purpose and activities of the Penn Center and its community outreach plan. A list of organizations with which the center hoped to collaborate was included. The message concluded with a request to meet so that the coordinator could obtain community input on the research recruitment...

The Carl Rinne Lewy Body Dementia Initiative provides support to people with Lewy body dementia and their care partners, educates professionals, and builds public awareness of Lewy body dementia in Michigan. The initiative facilitates three support groups in the Ann Arbor and metro-Detroit areas. The initiative has also created educational materials, expanded materials provided to patients through the cognitive and movement disorders clinics, and increased awareness among primary care providers...

Two videos from the Wisconsin Alzheimer’s Disease Research Center promote brain donation.

The Wellness Initiative of the Michigan Alzheimer’s Disease Research Center (MADRC) supports personal well-being, stress resilience, and creative self-expression among community caregivers and adults with mild memory loss. Programs are matched to participants’ current needs and include Wellness Day events, monthly wellness groups, and intensive courses in evidence-based skill-building such as mindfulness-based stress reduction.

Among the key challenges in Alzheimer's disease drug development is the timely completion of clinical trials. Unfortunately, clinical trials often suffer from slow or insufficient enrollment. Successful clinical trial recruitment describes a balance between expeditiously achieving full enrollment and ensuring an appropriate study sample. Investigators face a number of challenges to the successful negotiation of this balance. The failure to address these challenges means that drug development may...

This randomized controlled trial tested whether a memory and organizational aid, the MacArthur Competence Assessment Tool, improves Alzheimer’s disease patient performance on measures of capacity and competency to give informed consent. Eighty patients with very mild to early moderate Alzheimer’s disease and 30 cognitively normal older adults were recruited from an NIA-funded Alzheimer's Disease Center using the center's patient database. Based on expert reviews of the interview transcripts, the...

This study examined incentives and barriers to participating in Alzheimer’s disease clinical research among older adults. Two hundred thirty-five participants enrolled in the Boston University Alzheimer’s Disease Center research registry completed a survey assessing registry participation satisfaction, religiousness, trust in healthcare institutions, and medical research attitudes. Most participants reported initially enrolling in the registry for societal benefit. A commonly endorsed barrier to...

This study assessed the extent to which persons with Alzheimer’s disease retain their capacity to appoint a research proxy. More than 150 persons with Alzheimer’s disease were interviewed for their capacity to appoint a proxy for research and to provide consent to two hypothetical scenarios: a lower-risk randomized clinical trial testing a new drug and a higher-risk randomized clinical trial testing a neurosurgical intervention. Researchers concluded that a substantial proportion of Alzheimer’s...

In this study, four groups of 30 persons per group defined by self-identified ethnicity (Latino Puerto Ricans or non-Latino whites) and caregiver status (caregivers or noncaregivers) completed free-listing exercises to identify the words they use when they describe Alzheimer’s disease causes, symptoms, caregiving, and research risks and benefits. The researchers identified notable differences in how Latino Puerto Ricans and non-Latino whites talk about Alzheimer’s disease and Alzheimer’s disease...

The ability to measure attitudes toward biomedical research has become important, given the increasing need to improve the recruitment of research participants. The Research Attitudes Questionnaire is a significant predictor of the public’s attitudes toward and willingness to participate in research, yet limited data are available on its psychometric properties. This study evaluated the scale’s internal consistency and dimensionality using a large Internet-based sample from the United States...

Analysis of data from more than 5,000 probable Alzheimer’s disease dementia research participants in the National Alzheimer’s Coordinating Center Uniform Data Set found that participants with spousal study partners were more likely to qualify for Alzheimer's clinical trials than participants with adult child study partners. Participants with adult child study partners were more frequently ineligible because of age, residence in a skilled nursing facility, excluded low scores on the Mini-Mental...

The objective of this study was to assess the prevalence of study partner types and measure how these types associate with participant-related outcome measures. Retrospective analyses were conducted of six Alzheimer’s Disease Cooperative Study randomized clinical trials. Study partners were categorized as spouse, adult child, or other. According to the analyses, people with nonspousal caregivers less frequently participate in Alzheimer’s disease dementia trials. The study authors concluded that...

Fifty cognitively normal participants were interviewed about barriers and facilitators to joining an Alzheimer's disease prevention trial after being randomized to one of two hypothetical Alzheimer’s disease risk scenarios: 1) the general age-related risk for Alzheimer’s disease, or 2) being at 50 percent increased risk for Alzheimer’s disease. Thirteen themes of facilitators and five themes of barriers were identified. The most common barrier was fear related to taking the study drug...

This study examined researchers’ perspectives on the role of study partners in dementia research. Semi-structured individual interviews were conducted with 17 researchers (principal investigators, study coordinators, and research nurses) at two academic research sites. According to researchers, study partners either make or help make research enrollment and post-enrollment decisions, serve as knowledgeable informants for the participants, manage the logistics that enable participants to comply...

Most Alzheimer’s disease caregivers are not spouses and yet most Alzheimer’s disease dementia trials enroll spousal study partners. This study examined the association between caregiver relationship to the patient and willingness to enroll in an Alzheimer’s disease clinical trial and how caregiver burden and research attitudes modify willingness. Interviews were conducted with 103 caregivers (spouses, domestic partners, or adult children) who met criteria for ability to serve as a study partner...

Data from the National Alzheimer’s Coordinating Center Uniform Data Set was examined for the frequency of informant replacement among Alzheimer’s disease dementia participants. The data was also analyzed to determine the patient and informant characteristics associated with replacement and to evaluate how replacement affected research outcome measures. Findings suggest that informant replacement is relatively common, may have implications to study analyses, and warrants further examination in...

To facilitate recruitment and retention of participants, the Michigan Alzheimer’s Disease Research Center (MADRC) hosts an annual appreciation luncheon for research volunteers and their families, donors, and community partners. MADRC evaluates this activity by soliciting feedback from attendees on their satisfaction with the event (e.g., content, format, and materials) and suggestions for future topics.

Registry participants receive an information packet including contact information for Michigan Alzheimer’s Disease Research Center (MADRC) staff, brochures on relevant clinical services and education/wellness programs, and a list of currently recruiting studies. Appreciation for volunteers’ commitment is shown through birthday cards, holiday cards, and an annual gift to promote brain/physical health, such as a pedometer.

The Brain Autopsy and Donation Program in the Michigan Brain Bank (MBB) provides individuals and families an opportunity to contribute to research. Participants are eligible if they are enrolled in an affiliated study or were seen by a neurologist at the University of Michigan. Information packets consist of a brochure, a booklet explaining the brain autopsy program, a wallet-sized information card, and refrigerator magnet. When the participant dies, the next-of-kin is sent a pathology report...

The Outreach and Recruitment Core of the Michigan Alzheimer’s Disease Research Center (MADRC) has implemented an education program tailored for African Americans that facilitates participation in MADRC studies. One technique involves Lunch and Learn education sessions and memory screenings offered in conjunction with community health fairs. These sessions have been offered at Detroit-area churches as well as the University of Michigan Detroit Center facility. The MADRC Outreach and Recruitment...

The Michigan Alzheimer’s Disease Research Center (MADRC) has developed partnerships with three regional Alzheimer’s Association chapters. Since 2012, they have co-sponsored and participated in annual community educational programs in the Ann Arbor (MI), Southfield (MI), and Toledo (OH) areas. “Alzheimer’s Research Nights” are held in August each year around the states of Michigan and Ohio. The presentations included research information from the most recent Alzheimer’s Association International...

A recruitment alert is used in the University of Michigan electronic medical record (EMR) platform, EPIC–MiChart, to identify patients who might qualify for research studies conducted by the Michigan Alzheimer’s Disease Research Center (MADRC). This recruitment alert functionality has proven to facilitate recruitment and decrease the enrollment period for a study. It can also reduce the time and effort of study coordinators to identify potential patients for a study. Additionally, recruitment...

The Michigan Alzheimer’s Disease Research Center’s newsletter facilitates recruitment and retention while providing Alzheimer’s disease education. It is published biannually and mailed to all participants in the center’s research studies, with an electronic version sent to community and academic partners. Each issue highlights actively recruiting studies, research findings from center studies, profiles of center staff and research participants, education on emerging topics in the field, and...

The "Headlines" newsletter from the Wisconsin Alzheimer’s Disease Research Center (WADRC) includes news, Center highlights, information on upcoming events, and descriptions of select open studies. The newsletter was launched in 2014 and is now available as an e-newsletter about twice a month.

This poster from the Wisconsin Alzheimer’s Disease Research Center (WADRC) encourages participants to refer friends and family members to volunteer to participate in clinical trials. The poster indicates that WADRC is recruiting people with mild cognitive impairment and people ages 45-65 with or without parental history of Alzheimer’s. The poster includes contact information and is distributed at ADRC participant events.

This online web portal from the National Institutes of Health (NIH), includes information for the public on participating in a clinical trial. The portal includes information for parents and family members, basic information on clinical trials, and personal stories from trials participants.

ClinicalTrials.gov is a database of privately and publicly funded clinical studies conducted around the world. It is provided by the National Library of Medicine at the National Institutes of Health. Users can explore over 250,000 research studies in all 50 U.S. states and over 200 countries.

ResearchMatch brings volunteers together who are trying to find clinical trials and research studies. The site emails participants about studies that may be a good fit for them.

The "Vital News" newsletter is a biannual publication of the Wake Forest School of Medicine Alzheimer’s Disease Research Center that provides information to current, former, and potential study participants. It is mailed hard-copy to more than 16,000 recipients.

The Wake Forest School of Medicine Alzheimer’s Disease Research Center developed a physician referral pad for doctors to recommend patients into a memory study. The small pads fit in a physician’s lab coat and are printed in neon green so they do not get lost in the patient’s other visit papers.

The All of Us Research Program has many resources, such as videos, social media postings, and websites.

This website, from the National Institutes of Health Clinical Center, provides a searchable database of clinical trials. The site serves as a registry of publicly supported clinical studies conducted mostly in Bethesda, MD.

The Wake Forest School of Medicine Alzheimer’s Disease Research Center designed artwork for printing on church hand fans to promote Alzheimer’s disease research. The catch phrase, “Research brings Knowledge. Knowledge brings Answers. Answers bring Hope!” was developed to demystify research for people living in rural North Carolina.

The National Strategy for Recruitment and Participation in Alzheimer’s and Related Dementias Clinical Research outlines practical, proactive approaches to help study sites engage a wider, more diverse number of volunteers.

A six-panel Spanish-language brochure from the Rush Alzheimer’s Disease Center provides reasons for participating in research, benefits, and how to get more information. It includes an infographic of ways for people to protect their brain health, including tips for healthy eating, exercise, and participating in activities.

This health information article contains information on participating in Alzheimer's disease research and why it matters. It covers the benefits and risks of participating in an Alzheimer's or related dementias clinical trial, questions to ask, safety, and tips for finding trials.

NIA webpages provide tips for healthcare professionals to communicate effectively with older patients.

This toolkit, available in English, Spanish, and Chinese, supports presentations to encourage older adults and their family caregivers, including underrepresented populations, to consider participating in research. The toolkit includes a presentation PowerPoint (in long and short versions) which focuses on Alzheimer’s and dementia research and can be delivered by healthcare professionals, aging services providers, community leaders, and others. It also includes a user guide, flyer, and fact...

This online article is designed as a guide to support healthcare professionals in managing older patients with cognitive impairment or dementia, suggests care strategies following patients' diagnostic evaluation. The article discusses developing management and patient support plans, tips for communicating with the patient and caregiver, ways to discuss clinical trials, and resources for patients and professionals to learn more.

This prospective qualitative study documented the subjective experiences of study partners in dementia research. Up to three semi-structured interviews were conducted with each of 62 study partners involved in a range of dementia studies. Content analysis demonstrated that study partners perform a range of tasks—often within the context of being a caregiver—that enable cognitively impaired individuals to participate in dementia research. These tasks present study partners with unique burdens and...

This study examined whether asking participants to meet biomarker criteria is a barrier to enrollment in Alzheimer’s disease prevention clinical trials. One hundred thirty-two older community volunteers who self-reported normal cognition were provided with one of two theoretical informed consent forms. One form indicated that the results of an amyloid positron emission tomography scan would not be shared with the participants (blinded enrollment). The other consent form stated that only persons...

This five-page document is intended as a tool to support investigators, research managers, recruitment/outreach staff, research assistants, and coordinators involved with the Harvard Aging Brain Study (HABS) and to help inform sponsors of the resources and the planning process used to support recruitment needs. Study-specific needs are addressed during the pre-initiation stage by the HABS research team, and the plan is tailored to support study-specific recruitment needs. Recruitment efforts are...

This five-page document presents a standardized recruitment plan for prevention, symptomatic, and observational trials conducted at the Center for Alzheimer Research and Treatment (CART), Brigham and Women’s Hospital and Harvard Medical School. The plan covers pre-initiation, study start-up, and study initiation phases. It is intended as a tool to support investigators, recruitment/outreach staff, research assistants, and coordinators and to help inform sponsors of the resources and the planning...

The Community Action Council at the Boston University Alzheimer's Disease Center (BU ADC) is comprised of leaders from the older adult African-American community. Members are invited to present new research studies, discuss recruitment strategies, report research findings, and provide education or feedback on specific initiatives. Standing members of the council include leaders in the greater Boston African-American community, registry participants, and collaborative partners from Boston...

This collaborative initiative among the outreach groups at the Boston University Alzheimer's Disease Center, Massachusetts Alzheimer's Disease Research Center, and the Alzheimer's Association brings local researchers and health professionals into diverse communities to discuss dementia research and care management in an informal environment. Called Science Cafés, these events are highly interactive and discussion based. Topics include brain health, normal versus abnormal memory, memory...

At this free 3-hour educational event, presenters from the Boston University Alzheimer's Disease Center highlighted lifestyle factors and brain health, current understanding of Alzheimer’s disease, and current and future research. Following the presentations, participants enjoyed a Mediterranean-diet style meal prepared by local chefs.

This free 8-week educational course, offered twice yearly, is targeted to healthy older adult community members interested in learning more about normal aging, abnormal aging (particularly Alzheimer's disease), lifestyle factors, and strategies and skills that can contribute to healthy brain aging. Information about actively recruiting studies is also provided. AgeWISE meets for an hour and a half each week and covers topics using lectures and class discussions. Students are assigned homework to...

This web-based project is designed to inform visitors about the need for robust and diverse participation in Alzheimer's research and to allow interested families to share their research interests. The website features a blog with helpful information for people with Alzheimer's and their families and caregivers. Visitors are encouraged to join ACTNOW to receive email updates about Alzheimer's research and community events.

The Oregon Rural Practice-Based Research Network (ORPRN) is a statewide network of primary care physicians, community partners, and academicians who study the delivery of health care to rural residents and work to reduce rural health disparities. ORPRN works with the Layton Aging and Alzheimer's Disease Center to notify providers and patients about center studies. Research assistants are embedded in the communities to support this work.

BUILD EXITO is an NIH funded program that provides undergraduate minority students opportunity to work with a research mentor for 2 years.

This cross-sectional study examined conceptions of dementia in 92 family caregivers for persons with dementia from four ethnic/racial groups: African-American, Anglo European-American, Asian-American, and Latino. In-depth interviews explored participants' ideas about the nature and cause of dementia, known as explanatory models. These explanatory models were categorized as biomedical, folk, or mixed (folk and biomedical). Overall, 54 percent of caregivers held mixed explanatory models. Although...

This paper details qualitative analysis of interviews with 23 Chinese families and extensive fieldnotes generated by project ethnographers and interviewers in order to identify sociocultural barriers to recruitment that emerged during a 4-year study of dementia caregiving among Chinese families in the Boston area. The analysis identified the following themes: dementia-related changes were construed as a normal part of aging rather than a disease, making it more difficult to identify dementia...

In this journal article, researchers describe the history, development, and success of the recruitment and screening procedures used by researchers at the UC Davis Alzheimer's Disease Center to facilitate minority enrollment in research. The article discusses the elements of an active community-outreach approach, including hiring and training a bilingual staff, providing transportation to and from study sites, and offering in-home cognitive screening. This approach resulted in a dramatic...

In an effort to understand cultural attitudes towards brain donation, four Alzheimer's Disease Research Centers conducted focus groups to explore beliefs about and attitudes toward brain donation among African-American, Chinese, Caucasian, and Latino research subjects and their family members. Researchers found that many of the concerns, attitudes, and beliefs about brain donation were similar across the four ethnic groups. Concerns and attitudes fell into three categories: concerns and...

African-American, Caucasian, Asian, and Latino research volunteers were surveyed at 15 Alzheimer Disease Centers to identify predictors of willingness to assent to brain donation. Positive predictors included older age, Latino ethnicity, understanding of how the brain is used by researchers, and understanding of what participants need to do to ensure their brain will be donated. Negative predictors included African/African-American race, belief that the body should remain whole at burial, and...

This issue of the UC Davis Alzheimer's Disease Center newsletter, produced in both English and Spanish, features articles on "Ethnic disparities in brain health and dementia" and a profile of an African-American family participating in the ADC's brain donation program. These plus other articles support a call to action for individuals to join research studies at the center.

This website is designed to help recruit and retain racial/ethnic minorities into therapeutic clinical trials to reduce cancer-related health disparities.

A bookmark from the Wisconsin Alzheimer’s Disease Research Center (WADRC), printed on both sides, includes a note of appreciation, some statistics about the Wisconsin Brain Donor Program, and multiple methods of contact (phone, Brain Bank email, and 24-hour page number).

This six-panel flyer, available in English and Spanish from the Shiley-Marcos Alzheimer's Disease Research Center, describes the study's purpose, eligibility criteria, procedures, and benefits of participation including inclusion in Quality of Life programs and Support Groups. It outlines the requirements for study participation in easy-to-read, clear language and focuses on the benefits of participating in the study.

A three-page handout for physicians and healthcare staff on what patients can gain from participating in research, including free evaluations, tests, and consultations.

This website lists quality-of-life programs available to participants and their families, caregivers, and supporters of the Shiley-Marcos Alzheimer's Disease Research Center. Many of the programs are virtual and include support groups for ApoE4 carriers, people with early-stage Alzheimer's, people with early-onset Alzheimer's, and caregivers of people with Lewy body dementia or frontotemporal dementia. Other activities offered include a musical biography and scrapbooking workshop, museum tours...

This quarterly newsletter, published by the Shiley-Marcos Alzheimer's Disease Research Center (ADRC), addressed concerns, reflections, and coping skills of people with Alzheimer’s or a related dementia. The newsletter shared research, provided a forum for discussion, and connected people with dementia with one another. Authors with dementia contributed to the newsletter in the form of articles, poetry, or letters. While this newsletter is no longer active, digital archives are available online.

Published twice a year, this newsletter features updates on research, resources, and news generated by the Shiley-Marcos Alzheimer's Disease Research Center. The newsletter is written to be accessible to a lay audience, and features stories by study participants and their families, research updates, and information on trials that are enrolling participants. All study participants are given a printed copy of the newsletter.

These place cards from the Wisconsin Alzheimer's Disease Research Center (WADRC) were used at the tables of participant appreciation events. They include a note of appreciation and contact information.

Written by faculty and staff at the Michigan Alzheimer’s Disease Research Center (MADRC), blog posts are distributed through the University of Michigan Health System’s “Michigan Health” blog. Recent posts include: How to Visit a Loved One Who Is Dying: A Caregiver and Patient’s Tips Alzheimer’s Disease vs. Dementia: What’s the Difference? 5 Ways to Protect Your Memory from Dementia Alzheimer’s: Not Just a Disease for Older Adults How Therapy Animals Help Those Living with Dementia A Lewy Body...

This four-page volunteer form is distributed at local neurology/geriatric clinics and community events to facilitate recruitment into studies at the Michigan Alzheimer’s Disease Research Center (MADRC).

The C2C registry is used to register and notify people of opportunities to participate in clinical research studies conducted by UC Irvine for Memory Impairments and Neurological Disorders.

The annual Southern California Alzheimer’s Disease Research Conference, in partnership with Alzheimer’s Orange County, presents the latest clinical research on Alzheimer’s disease and related dementias. The event reaches a diverse audience of more than 1,250 clinicians, researchers, students, aging-services providers, and caregivers.

UCI MIND video topics include research and educational sessions on Alzheimer’s disease and related topics.

This 39-slide presentation provides an explanation of Alzheimer’s disease, addresses the question of why more women than men are affected by the disease, reviews risk-reduction strategies for women, and describes research conducted at the UC Irvine Institute for Memory Impairments and Neurological Disorders (UCI MIND).

This six-panel brochure provides information on the Longitudinal Study for adults (age 60 and older) with normal memory, mild cognitive impairment, or early Alzheimer’s disease, conducted by the UCI Institute for Memory Impairments and Neurological Disorders (UCI MIND). The brochure lists what is involved in participation: an annual visit, a study partner, procedures (e.g., lumbar puncture), and brain donation upon death. It also answers questions about goals of the study, eligibility...

The UCI Institute for Memory Impairments and Neurological Disorders (UCI MIND) hosts summer and holiday appreciation events for research participants and their family members or friends.

This one-page flyer describes the 90+ Study, a longitudinal study on healthy brain aging and dementia for adults (ages 90 and older), conducted by the UCI Institute for Memory Impairments and Neurological Disorders. The flyer lists what is involved in participation: bi-annual visits, a one-time magnetic resonance imaging and amyloid positron emission tomography scan, and brain donation upon death.

This six-panel brochure describes the Successful Aging Program, a longitudinal study on healthy brain aging for adults (ages 65 and older) with normal memory, conducted by the UCI Institute for Memory Impairments and Neurological Disorders (UCI MIND). Participation requires an annual visit, a study partner, procedures (e.g., lumbar puncture), and brain donation upon death. The brochure cover features an Asian couple.

This 62-slide presentation covers why recruitment and retention are important and goes over design choices, registries, and retention strategies.

This quarterly publication presents articles on research and other recent happenings and announcements of the UCI Institute for Memory Impairments and Neurological Disorders. It has been published since 1999.

This postcard is distributed at community outreach events of the UCI Institute for Memory Impairments and Neurological Disorders (UCI MIND). Check-off options include: add your email to the UCI MIND registry; request to be contacted about research participation or philanthropic opportunities; or add your name to the email or mailing list. Cards can be turned in at the event or mailed.

This seven-page handout presents frequently asked questions and sample answers for community outreach volunteers. Questions relate to Alzheimer’s disease risk, diagnosis and treatment, and research participation.

This website provides information about the Harvard Aging Brain Study (HABS) Research Participant Appreciation Day in November 2016.

This research article provides an overview of a community-based participatory research project that involved a partnership between Indiana University and the Senior Companions Program of Catholic Charities Indianapolis. Sixty senior companions participated in focus groups to describe how the Senior Companions Program impacts their quality of life as well as that of their clients, who were predominately African Americans. The authors attribute the success of their research project to the...

This video was created to help recruit participants into the Exercise in Adults with Mild Memory Problems (EXERT) trial.

The Priority Population Toolkit is a resource for researchers who would like to work with populations facing health disparities and underrepresentation in research. Sections address these target populations: African American, Hispanic and Latino/Latina, LGBT, and People with Disabilities. The toolkit was developed by the Recruitment, Retention, and Community Engagement Program of the Center for Clinical and Translational Science at the University of Illinois at Chicago.

A one-page handout describes the two types of studies conducted at the Rush Alzheimer's Disease Center (RADC), epidemiological studies and clinical trials, and explains the differences between the two. The handout is in English on one side and Spanish on the other.

This study examined barriers and facilitators to clinical research participation among African Americans. Researchers conducted 8 focus groups consisting of community members and community leaders (64 total), including clergy, community healthcare providers, and service providers who may influence people’s decision to participate in research. The most common barriers to participation included fear and mistrust of research due to such factors as lack of information about research and prevailing...