Underrepresented

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

A collection of videos about Alzheimer’s disease and clinical trials, including topics on clinical trials awareness and recruiting.

This Spanish language video from the Shiley-Marcos Alzheimer’s Disease Research Center covers the symptoms of Alzheimer’s disease and the need to include the Latino community in clinical research.

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.

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

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...

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

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.

This 3-minute video features Dan Gasby, who with his wife, the celebrity B. (Barbara) Smith, has advocated for greater public awareness of the disease and for participation in clinical trials. Smith was diagnosed with early Alzheimer’s disease in 2014.

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.

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 36-page guide promotes public health strategies to address dementia in American Indian/Alaska Native communities. The strategies fall under three themes: educate and empower community members, collect and use data, and strengthen the workforce.

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.

This 12-minute video, entitled "GAPS," addresses the challenges presented by Alzheimer’s disease in Asian American communities.

This webpage and 5-minute video encourages the participation of American Indian, Alaska Native, and other indigenous communities in Alzheimer’s disease clinical trials.

"Dementia Awareness" is a 16-slide presentation from the Stanford Alzheimer's Disease Research Center (ADRC) on the need for partnership with the American Indian community to raise awareness and increase participation in dementia research.

"Dementia in the Latino Community: What We Should Know and Do" and "Dementia in the Latino Community" are slide presentations in Spanish and English, respectively, from the Stanford Alzheimer's Disease Research Center.

A one-page handout from the Stanford Alzheimer's Disease Research Center explains brain donation in simple steps.

A six-panel brochure from the Stanford Alzheimer's Disease Research Center uses a frequently asked questions format to provide information on brain donation.

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 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...

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...

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...

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) 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 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 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 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...

Webnovela Mirela is a program for Hispanic/Latino caregivers of individuals with Alzheimer's or other dementia.

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 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...

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 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...

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...

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...

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

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

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

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

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

This report describes the process used to develop the content for culturally relevant health information fact sheets targeted to Indigenous communities.

Granny Pearl is a play showing how aging and Alzheimer’s disease can affect African-American families. The story describes the signs of Alzheimer’s as observed by teenage grandchildren and highlights their struggle to cope with changes in their grandmother’s behavior. The importance of seeking medical and spiritual help and maintaining a supportive, loving home environment is stressed. The University of Kentucky Alzheimer’s Disease Center worked with the local faith community to recruit...

This toolkit, originally developed by the African American Dementia Outreach Partnership and now distributed by the Balm in Gilead’s National Brain Health Center for African Americans, contains many resources for caregivers and families.

This 72-page manual shares information learned during 4 years of a national grant to build awareness and support related to Alzheimer's disease in the Lexington/Bluegrass area in Kentucky.

At a one-hour “Aging with Grace” education session, information was presented on “living longer, healthier, and smarter.” Topics covered were social engagement, exercise and physical activity, diet and nutrition, and brain health and normal aging. A full-color, one-page flyer targeted the 2017 class to African Americans (shown in photos on the flyer) and other under-represented populations. The flyer included date, location, and RSVP information.

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.

"Evaluation and Reporting of Age-, Race-, and Ethnicity-Specific Data in Medical Device Clinical Studies" is a 36-page document, issued in 2017, that provides guidance for industry and Food & Drug Administration (FDA) staff outlining the FDA’s data-reporting expectations and recommendations for the evaluation and reporting of age-, race-, and ethnicity-specific data in medical device clinical studies. The primary intent of these recommendations is to improve the quality, consistency, and...

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

The "Diversity in Clinical Trial Participation" web page, published by the U.S. Food & Drug Administration, explains the requirements for, and public benefits of, including diverse populations in clinical trials. The page provides links to multiple resources on diversity in clinical trials.

This NIA video series covers topics about participating in Alzheimer's disease research.

The "NIH Scientific Workforce Diversity Toolkit," published by the Scientific Workforce Diversity (SWD) Office of the National Institutes of Health (NIH), is a free, downloadable interactive resource that institutions can use to help advance their own faculty diversity and inclusion practices. The toolkit guides users through evidence-based activities to foster an inclusive culture including diversifying the talent pool, conducting unbiased talent searches, conducting outreach and networking...

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

This fact sheet is part of a series on dementia published by the Indigenous Cognition & Aging Awareness Research Exchange.

The fact sheet provides information for healthcare providers on the different ways that age-related dementia is understood by indigenous communities.

The fact sheet describes the warning signs and symptoms of dementia, and provides a list of resources.

This one-page diagram provides information on preventing dementia for indigenous peoples.

The one-page fact sheet describes the progression of dementia from diagnosis to the late stages.

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

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

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

"Preventing Dementia in Indigenous Peoples by Aging Well: Advice from Older Indigenous Peoples" is a fact sheet that combines a summary of advice from Alzheimer's societies, older indigenous adults, people diagnosed with dementia, caregivers, knowledge keepers, and health care providers w. The fact sheet includes a list of resources and a blank space for local organizations to add their own contact information. It is designed in 8 pages so that it can be printed both on regular printer paper or...

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

This one-page flyer, targeted to prospective African-American participants, describes the importance of Alzheimer’s research personally, for loved ones, and for the community.

Outreach materials for the Anti-Amyloid Treatment in Asymptomatic Alzheimer's (A4) Study at Penn Memory Center include: A customizable flyer for study sites A full-color promotional ad targeting prospective African-American participants A 4-minute radio interview about the center's active recruitment of African-American participants

This one-page, four-color handout includes brief information on the Mediterranean Diet and physical exercise. Photographs feature African-American couples.

Penn Memory Center researchers used a multi-phase, theory-driven research process to craft and test advertising messages that would motivate African-American and non-Hispanic white adults to accompany their parent, step-parent, or parent-in-law to see a specialist for a memory evaluation. Staff members created a two-page handout that features images of several full-color ads and encourages organizations that provide services to older adults to make use of them, free of charge. Penn Memory Center...

This one-page, full-color flyer describes the importance of brain autopsy to research and the special need for brain donations from people who are African American. Several bullet points summarize the donation process, and a paragraph answers the question, “Does donation fit in with religious beliefs?” Contact information is provided.

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

This project of award-winning photographs of caregivers is featured in the Penn Memory Center's creative space, "Making Sense of Alzheimer's."

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

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

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

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

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

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

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

A one-page handout from the Rush Alzheimer’s Disease Center provides information for participants to share with family members about their participation in the Minority Aging Research Study (MARS) Organ Donation Program. The handout includes information on MARS, which is open to African Americans 65 years old or older; why donation is important; what to do at the time of death; and the process, including transportation, what will be removed, length of the procedure, and the follow-up report that...

A three-page handout developed for the Latino CORE Study at the Rush Alzheimer’s Disease Center includes 16 frequently asked questions related to donation. The series of questions covers the process and benefits of brain donation for helping scientists learn about changes in the brain, spinal cord, and nerve and muscle tissue in order to better treat and prevent memory loss and dementia in future generations.

This popular fact sheet, published by the National Institute on Aging (NIA), discusses the signs and symptoms, causes, diagnosis, and treatment of Alzheimer's disease, as well as changes in the brain. The fact sheet is available in print in English and online in English and Spanish.

This AgePage brochure, available in English and Spanish, discusses the importance of advance care planning for older adults, including identifying and gathering important papers, step-by-step instructions on getting your affairs in order, and resources to learn more. The information in the brochure is also available online on the NIA website in English and Spanish.

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

A checklist written in Spanish that provides important steps to take after an Alzheimer's Diagnosis.

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

The Student Ambassador Program at the Boston University Alzheimer's Disease Center (BU ADC) was established as a Boston University School of Medicine service-learning program. The program's objectives are to educate students about Alzheimer's disease and related cognitive impairments, improve students’ communication skills with older adults and cognitively impaired individuals, educate students about culturally diverse communities, and recruit African Americans into BU ADC research studies...

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

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

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

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

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

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

The CNN news story, "History of mistrust complicates study of dementia in African-Americans," features study participants at UC Davis Alzheimer's Disease Center and Rush Alzheimer's Disease Center in Chicago considering brain donation for family members with Alzheimer's. The participants address issues of distrust of research due to past abuses of African Americans. The article also includes a short video on "What Is Dementia?"

This 1-day educational program for Spanish-speaking adults and caregivers covers Alzheimer's disease and other topics.

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

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

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

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

This two-sided card includes six frequently asked questions about lumbar puncture and a testimonial from a Chinese-American research participant.

This presentation designed by the UC Irvine Institute for Memory Impairments and Neurological Disorders alternates between Chinese and English and includes topics such as the aging population, ways to ensure brain health while aging, and age-related brain disease.

“Forget Me Not” by Garrett Davis is a play featuring an African American man with early Alzheimer’s disease and his family. In 2017, two presentations of the play were sponsored by the Global Alzheimer’s Research Platform Foundation, the US Against Alzheimer’s Network, and GDavis Productions. The performances were held at the historic Hiburnian Hall in the Roxbury neighborhood of Boston.

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 documentary features personal testimonies of how Alzheimer’s has affected Native American communities in North Carolina.

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

“Maid’s Door” is a play written by Cheryl Davis that centers around an African-American matriarch Ida Farrell exhibiting signs of Alzheimer’s disease. The drama addresses the impacts of Ida’s changes on her family, including her adult daughter who cares for her. The Sticht Center for Healthy Aging and Alzheimer's Prevention partnered with the North Carolina Black Repertory Company to promote the play and host talk-back sessions after the play. In these sessions, experts talked with the audience...

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

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