Research Articles

This article summarizes findings from qualitative interviews with Black and White prospective participants that identified barriers and facilitators to Alzheimer’s research recruitment.

This article explores how narrative-based recruitment materials for African Americans may be better tailored to enhance recruitment.

This review article describes the inclusion of underrepresented groups in NIH-funded research Alzheimer’s research.

This article examines barriers and facilitators to the enrollment of Asian Americans and Pacific Islanders in a dementia research registry.

This article presents a framework in which researchers partner with community advisory boards to accelerate the recruitment of underrepresented groups to Alzheimer’s research.

This resource describes a strategy that leverages family relationships to support the recruitment of African American adults to Alzheimer’s clinical research.

This resource provides recommendations for how to engage people living with dementia in all stages of clinical research.

This resource describes barriers to recruiting Latino adults for dementia research during the COVID-19 pandemic, with an emphasis on social isolation.

This community-engaged study identifies barriers and facilitators to clinical research participation for people living with dementia and their caregivers.

This study identifies themes in how older African Americans perceive neurovascular clinical trials.

This review article presents a framework for advance care planning clinical trials that are embedded into existing health care.

This study identifies characteristics of U.S. adults that are associated with the self-reported likelihood to participate in dementia-prevention clinical trials.

This resource describes trends in recruitment over a 20-year period of NIH-funded Alzheimer’s clinical trials.

This article describes how caring behaviors by recruiters impact recruitment in African American and Non-Latinx White older adults.

This resource describes a support program in which dementia caregivers are matched Dementia Ambassadors trained to educate caregivers and provide appropriate referrals.

This article examines barriers and facilitators to the clinical trial recruitment of Mexican and Mexican American people at risk for autosomal dominant Alzheimer’s disease.

This article provides a framework for planning disclosure and consent procedures for research studies involving participants with dementia.

This resource summarizes key insights from the second annual Latinos & Alzheimer’s Symposium.

This resource describes the most effective strategies to increase research participation among older African Americans, based on an analysis of peer-review studies.

This article examines barriers and facilitators to brain donation in a group of Latino adults.

This resource describes barriers and facilitators of dementia care through the lens of African American caregivers in rural Kentucky.

This resource explores different ways clinical researchers adapted their recruitment strategies during the COVID-19 pandemic.

This research article describes how Alzheimer’s disease clinical trial participants view the role of the study partner and how their view informs the selection process.

This article explores Alzheimer’s disease knowledge and perception within a Native American community.

This resource explores how academic health centers can more closely engage with their surrounding communities.

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.

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.

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

Using research results, Alzheimer's disease scientists developed materials that communicate information to participants about the risk of developing Alzheimer's.

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 article describes how the University of Pittsburgh’s Alzheimer’s Disease Research Center used research participation stories to create messaging for recruitment materials.

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.

A research article from the Rush Alzheimer’s Disease Research Center helps researchers learn about their participants and procedures to better advance the science of Alzheimer’s and related dementias in Latinxs.

Gene Test or Not? is an online decision-making tool designed to help people decide about whether they should have the APOE genetic test.

This paper describes the development of a standardized approach to disclosing amyloid imaging research results to people with mild cognitive impairment.

The authors developed a document for use with potential study participants that describes the process of amyloid imaging and the implications of amyloid imaging results.

This paper outlines a framework created by the Alzheimer’s Prevention Initiative Genetic Testing, Counseling, and Disclosure Committee for large-scale disclosure of APOE results to study participants.

To test an intervention for increasing Alzheimer’s disease literacy among African Americans, the researchers enrolled 193 African American community-dwelling adults using culturally tailored education and messaging.

Researchers looked at how enrollment factors made a difference, broken out by race, on the progression of mild cognitive impairment and dementia. Using Alzheimer’s Disease Research Center data, they examined the rate of impairment between white participants and Black participants with age-at-progression survival models.

According to the article authors, the ideal participants for Alzheimer's disease clinical trials would show cognitive decline in the absence of treatment (i.e., placebo arm) and also would be responsive to the therapeutic intervention being studied (i.e., drug arm). This investigation tested whether machine learning models can effectively predict cognitive decline in people with mild to moderate Alzheimer’s disease during the timeframe of a phase III clinical trial. Data from 202 participants...

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...

This article describes a validated two-step process for recruiting asymptomatic amyloid-positive individuals into clinical trials. The process was tested using cohorts from three Alzheimer’s studies (ADNI-MCI, ADNI-CN and INSIGHT). During a pre-screening phase, researchers pre-selected a subset of individuals who were more likely to be amyloid positive, based on the automatic analysis of data acquired during routine clinical practice, before doing a confirmatory PET scan for these selected...

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...

Research participants who intend to donate their brains to a study on Alzheimer’s and related diseases are reliant on family members to fulfill the donation plan. Thus, family members play a pivotal role in increasing brain donation rates, particularly among underrepresented groups. In this study, researchers conducted focus groups with a total of 15 Latino adults who each has a parent age 65 or over. Analysis of the discussions support inclusion of family members during all stages of the...

People with Alzheimer’s disease are vulnerable to therapeutic misconception, particularly, the conflation of routine clinical care and scientific research. This misconception can compromise the informed consent process by causing prospective participants to underappreciate the level of risk involved in trial participation. The authors advocate for a more comprehensive informed consent process that accounts for the uniqueness of Alzheimer’s disease, creates a more productive and clear...

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...

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...

The aim of this study was to explore the feasibility of a 45-minute, culturally tailored presentation on Alzheimer's disease for professionals serving the Latino community and Latinos served by community organizations. Five lunch-and-learn events (“Smart Aging” presented in English to professionals and “Envejecimineto Digno” presented in Spanish to served Latinos) were conducted with a total of 40 professionals and 37 served Latinos. Researchers increased the pool of participants by scheduling...

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...

To help increase participation of Hispanic older adults in dementia research, this trial aimed to assess the effectiveness of a culturally tailored recruitment educational strategy for older Hispanic adults. Researchers held six one-session tailored dementia education events at trusted community senior centers. The participants were given contact information to complete if they were interested in dementia research and enrollment into the National Alzheimer’s Coordination Center was tracked...

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 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...

Two articles and an editorial address the question of whether paying research participants could be considered coercive. The first article notes concerns about risks, consent, and exploitation. The second article examines coercion as subjection, in which someone’s interests can be partially set back in virtue of being subject to another’s foreign will. The editorial weighs the arguments and views participation as work that should be fairly compensated. Malmqvist E. “Paid to endure”: Paid...

In collaboration with Nuestra Casa, a local community health advocacy organization, the Stanford Alzheimer’s Disease Research Center (ADRC) designed and successfully implemented a dementia awareness campaign in East Palo Alto, CA. The largely Latino community near Stanford had little knowledge of dementia and its consequences. This article describes the community-based participatory research model that was used to create materials and training for 20 promotoras (community outreach workers). The...

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...

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.

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...

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...

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...

This study modeled Alzheimer’s disease prevention clinical trials in order to assist investigators in making trial design choices. The authors used data from the National Alzheimer's Coordinating Center Uniform Data Set to model trial sample sizes, the numbers needed to enroll to account for dropout, and the numbers needed to screen to successfully complete enrollment. Researchers then examined how enrichment strategies affected each component of the model. For example, enriching for subjective...

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...

Rural residents diagnosed with cardiovascular disease (CVD) or with CVD-related risks are underrepresented in behavioral intervention trials. This literature review condensed the evidence and developed a conceptual framework of interlinked, multi-level factors affecting participation. In addition to contextual factors (i.e. patient, community and research levels), common factors impacting rural patients’ intent to enroll included lack of awareness and understanding about behavioral trials...

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...

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...

The Wisconsin Registry for Alzheimer's Prevention is a longitudinal observational cohort study enriched with people with a parental history of probable Alzheimer's dementia. Since late 2001, this registry has enrolled 1,561 people at a mean age of 54 years. Participants return for a second visit 4 years after baseline, then every 2 years. Eighty-one percent of participants remain active in the study after 9 years of follow-up. Assessments of cognition, self-reported medical and lifestyle...

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...

Identifying healthy individuals with amyloid pathology is an important challenge for Alzheimer's prevention clinical trials. This paper reported on noninvasive, cost-efficient techniques to detect preclinical Alzheimer's to meet this need. Researchers applied machine learning to structural MRI of 96 cognitively normal subjects to identify amyloid-positive ones. Used for subject classification in a simulated clinical trial setting, the proposed method saved 60 percent on unneeded CSF/PET tests...

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...

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.

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...

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...

Researchers who work with human subjects should address indirect burdens related to research duration, intensity, and invasiveness. This paper introduces the concept of perceived research burden. The authors developed, tested, and validated a new instrument, the Perceived Research Burden Assessment (PeRBA) and found that it has good internal consistency and acceptable validity. Lingler JH, Schmidt KL, Gentry AL, et al. A new measure of research participant burden: Brief report. Journal of...

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...

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...

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 resource describes the Student Ambassador Program at the Boston University Alzheimer’s Disease Research Center and cites a study that supports the program’s efficacy.

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 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 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...