Underrepresented

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

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

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

This webinar series from the Cleveland ADRC highlights medical information and social issues on brain health that are pertinent to the Black community.

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

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

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

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

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

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

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

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

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

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

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

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

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

Spotlight videos from the University of Pittsburgh Alzheimer’s Disease Research Center highlight research participants’ experiences.

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

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

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

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

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

This Spanish video encourages people to have memory testing if they are having any difficulties remembering.

This video discusses the importance of healthy volunteer participation in Alzheimer’s disease research.

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.

A video from the University of California, San Francisco, explains why diversity in research is important, and steps researchers can take to increase diversity in their studies.

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.

The Stanford ADRC provides videos and presentations about Alzheimer's and related dementias in Spanish.

"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.

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.