Abstract
Background: Registries have been proposed as a novel way to accelerate targeted recruitment for Alzheimer disease prevention clinical trials. However, there are limited data regarding registry effectiveness at accelerating recruitment and enrollment in research opportunities. This manuscript explores one site's experience with GeneMatch, a novel genetic registry for Alzheimer disease research. Methods: Referrals from GeneMatch to the site were tracked to understand the demographics of those referred and ultimate research enrollment outcomes. Referrals were cross-referenced with the site's existing recruitment database, to better understand the role of GeneMatch in the context of existing recruitment efforts. Results: GeneMatch referred 86 individuals to the site, resulting in 54 individuals coming into the site to pursue research involvement further. The majority of referrals (52/86, 60.47%) did not have prior contact with the site about research engagement, and having prior site contact did not significantly relate to engaging in on-site research. Conclusions: GeneMatch helped identify new individuals for participation in Alzheimer disease prevention studies. Results highlight the value of continuing local site-level efforts while also taking advantage of registries to enhance research recruitment. Ongoing efforts to further develop these and other novel strategies for outreach and engagement are much needed.
| Original language | English |
|---|---|
| Pages (from-to) | 148-152 |
| Number of pages | 5 |
| Journal | Alzheimer Disease and Associated Disorders |
| Volume | 35 |
| Issue number | 2 |
| DOIs | |
| State | Published - 2021 |
Bibliographical note
Publisher Copyright:Copyright © 2020 Wolters Kluwer Health, Inc. All rights reserved.
Funding
The authors would also like to acknowledge David Gordon and Hayley Salata’s assistance with accessing data to support this manuscript. The GeneMatch program was supported by the NIA (1UF1AG046150), the Alzheimer’s Association, Banner Alzheimer’s Foundation, the Flinn Foundation, and GHR Foundation. This Generation Program is funded by Novartis Pharma AG, Basel, Switzerland and Amgen, Thousand Oaks, CA, in collaboration with the Banner Alzheimer’s Institute located in Phoenix, AZ. Generation study 1 is supported by funding from the National Institute on Aging (1UF1AG046150), part of the National Institutes of Health, and the Alzheimer’s Association, FBRI, GHR Foundation, and Banner Alzheimer’s Foundation. Received for publication September 9, 2020; accepted October 31, 2020. From the *Sanders Brown Center on Aging; †Graduate Center for Gerontology, College of Public Health; §Department of Neurology, University of Kentucky, Lexington, KY; and ‡Banner Alzheimer’s Institute, Phoenix, AZ. This research was supported by the National Institutes of Health/ National Institute on Aging (P30 AG028383). The authors declare no conflicts of interest. Reprints: Shoshana H. Bardach, PhD, Sanders-Brown Center on Aging, University of Kentucky Alzheimer’s Disease Center, 1030 South Broadway, Suite 5, Lexington, KY 40504 (e-mail: shbardach@uky. edu). Copyright © 2020 Wolters Kluwer Health, Inc. All rights reserved.
| Funders | Funder number |
|---|---|
| Novartis Pharma AG, Basel, Switzerland and Amgen, Thousand Oaks | |
| National Institutes of Health (NIH) | |
| National Institute on Aging | P30AG028383, 1UF1AG046150 |
| National Institute on Aging | |
| Alzheimer's Association | |
| Flinn Foundation | |
| Banner Alzheimer’s Foundation | |
| GHR Foundation | |
| Foundation for Biomedical Research and Innovation |
Keywords
- Outreach
- Recruitment
- Registry
ASJC Scopus subject areas
- Clinical Psychology
- Gerontology
- Geriatrics and Gerontology
- Psychiatry and Mental health
