Barriers & Facilitators

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.