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Real‐world site experiences with a recruitment‐related registry: An exploration of Alzheimer's disease prevention research recruitment: Prevention (nonpharmacological) / Other.

Authors :
Bardach, Shoshana H
Langbaum, Jessica B
Jicha, Gregory A
Source :
Alzheimer's & Dementia: The Journal of the Alzheimer's Association; Dec2020 Supplement S11, Vol. 16 Issue 11, p1-1, 1p
Publication Year :
2020

Abstract

Background: Registries have been proposed as a novel way to identify accelerate recruitment for Alzheimer's disease prevention clinical trials. However, the role of registries in real‐world clinical settings remains largely unknown. Registry enrollment involves a combination of local site promotion of the registry as well as social media and advertising efforts to encourage participation. This manuscript explores one site's experience with GeneMatch, a novel genetic registry for Alzheimer's disease research. Method: Referrals from GeneMatch to the site were tracked to understand the demographics of those referred and ultimate research enrollment decisions. Using the site's existing recruitment database, referrals were cross‐referenced for prior research contact, to better understand the role of GeneMatch in the context of existing recruitment efforts. Result: There were a total of 86 GeneMatch referrals to the site, which ultimately 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 recruitment interest, and having such contact did not predict likelihood of ultimately signing a research consent. Conclusion: GeneMatch helped identify new individuals for participation in AD prevention studies. These results highlight the value of continuing local site‐level efforts while also taking advantage of registries to enhance research recruitment. Ongoing efforts to develop novel strategies for outreach and engagement are still needed. [ABSTRACT FROM AUTHOR]

Details

Language :
English
ISSN :
15525260
Volume :
16
Issue :
11
Database :
Supplemental Index
Journal :
Alzheimer's & Dementia: The Journal of the Alzheimer's Association
Publication Type :
Academic Journal
Accession number :
147467143
Full Text :
https://doi.org/10.1002/alz.043433