Underrepresented

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...