Alzheimer's & Dementia Outreach, Recruitment & Engagement Resources
Recruit & Retain Participants
Displaying 101 - 200 of 334 resources.
- 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.
- 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...
- 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...
- A link to the Alzheimer's Disease Research Centers (ADRCs) X account .
- 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. For a copy of the retention...
- 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...
- 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...