Barriers & Facilitators

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

This resource describes a strategy that leverages family relationships to support the recruitment of African American adults to Alzheimer’s 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 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 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 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 resource explores how academic health centers can more closely engage with their surrounding communities.

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.

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

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.

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

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

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

The 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...

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

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

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.

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...

The NIH Strategic Plan for Tribal Health Research FY 2019–2023 is designed to improve NIH's relationship and collaborative efforts with American Indian/Alaska Native communities by enhancing communication and collaboration, building research capacity, expanding research, and enhancing cultural competency and community engagement.

"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...

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...

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...

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...

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 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...

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 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...

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...

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...

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...

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...

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 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...

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...

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...

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 University of Maryland Center for Health Equity website is designed to help build trust between communities and health researchers. It includes fact sheets, articles, reports, and videos.

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...

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 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...

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...