Registries

This resource examines how the U.K.-based Join Dementia Research registry strongly bolstered recruitment efforts.

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

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

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

The online Mesulam Center Registry begins with an FAQ page, followed by six pages of questions to collect basic contact and health information and to gauge specific interest in research participation.

The Alzheimer's Prevention Registry was established and is led by the Banner Alzheimer’s Institute (Arizona Alzheimer’s Disease Center) and is a partnership of 11 health organizations.

The Healthy Brains website is an online resource center that provides individualized brain health assessment tools, lifestyle tips, information on clinical trials, videos, and medical news.

GeneMatch is a first trial-independent research enrollment program designed to recruit and refer cognitively healthy adults to Alzheimer’s prevention studies based in part on APOE test results. It enrolls individuals aged 55 to 75 years who live in the United States and self-report not having a diagnosis of cognitive impairment. Participants enroll online and are provided a cheek swab kit for APOE genotyping. Participants are not told their APOE results, though the results may be used in part to...

In this review, researchers summarize some of the available methods to improve Alzheimer’s disease research recruitment, the available literature to support or refute these strategies, and experiences at the Alzheimer’s Disease Research Centers. This article also addresses the application of community-based participatory research principles and the use of participant registries to enhance research enrollment and increase diversity of research samples. Grill JD, Galvin JE. Facilitating Alzheimer...

This toolkit, developed by the National Center for Advancing Translational Sciences at the National Institutes of Health, provides patient groups with the tools needed to advance medical research. Tools are developed for and by patient groups in concert with their academic, government, industry, and advocacy partners, and are designed to ensure patients are engaged as essential partners from beginning to end of the research and development process. Resources cover topics such as the principles...