Brain health registry GenePool study: A novel approach to online genetics research

Abstract Introduction Remote data collection, including the establishment of online registries, is a novel approach to efficiently identify risk for cognitive decline and Alzheimer's disease (AD) in older adults, with growing evidence for feasibility and validity. Addition of genetic data to on...

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Main Authors: Juliet Fockler, Winnie Kwang, Miriam T. Ashford, Derek Flenniken, Joshua Hwang, Diana Truran, R. Scott Mackin, Chengshi Jin, Ruth O'Hara, Joachim F. Hallmayer, Jerome A. Yesavage, Michael W. Weiner, Rachel L. Nosheny
Format: Article
Language:English
Published: Wiley 2021-01-01
Series:Alzheimer’s & Dementia: Translational Research & Clinical Interventions
Subjects:
Online Access:https://doi.org/10.1002/trc2.12118
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author Juliet Fockler
Winnie Kwang
Miriam T. Ashford
Derek Flenniken
Joshua Hwang
Diana Truran
R. Scott Mackin
Chengshi Jin
Ruth O'Hara
Joachim F. Hallmayer
Jerome A. Yesavage
Michael W. Weiner
Rachel L. Nosheny
author_facet Juliet Fockler
Winnie Kwang
Miriam T. Ashford
Derek Flenniken
Joshua Hwang
Diana Truran
R. Scott Mackin
Chengshi Jin
Ruth O'Hara
Joachim F. Hallmayer
Jerome A. Yesavage
Michael W. Weiner
Rachel L. Nosheny
author_sort Juliet Fockler
collection DOAJ
description Abstract Introduction Remote data collection, including the establishment of online registries, is a novel approach to efficiently identify risk for cognitive decline and Alzheimer's disease (AD) in older adults, with growing evidence for feasibility and validity. Addition of genetic data to online registries has the potential to facilitate identification of older adults at risk and to advance the understanding of genetic contributions to AD. Methods 573 older adult participants with longitudinal online Brain Health Registry (BHR) data underwent apolipoprotein E (APOE) genotyping using remotely collected saliva samples and a novel, automated Biofluid Collection Management Portal. We evaluated acceptability of genetic sample collection and estimated associations between (1) sociodemographic variables and willingness to participate in genetics research and (2) APOE results and online cognitive and functional assessments. We also assessed acceptance of hypothetical genetics research participation by surveying a larger sample of 25,888 BHR participants. Results 51% of invited participants enrolled in the BHR genetics study, BHR‐GenePool Study (BHR‐GPS); 27% of participants had at least one APOE ε4 allele. Older participants and those with higher educational attainment were more likely to participate. In the remotely administered Cogstate Brief Battery, APOE ε4/ε4 homozygotes (HM) had worse online learning scores, and greater decline in processing speed and attention, compared to ε3/ε4 heterozygotes (HT) and ε4 non‐carriers (NC). Discussion APOE genotyping of more than 500 older adults enrolled in BHR supports the feasibility and validity of a novel, remote biofluids collection approach from a large cohort of older adults, with data linkage to longitudinal online cognitive data. This approach can be expanded for efficient collection of genetic data and other information from biofluids in the future.
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spelling doaj.art-77365c05c256414eba0558b0c2eb910b2022-12-22T02:28:29ZengWileyAlzheimer’s & Dementia: Translational Research & Clinical Interventions2352-87372021-01-0171n/an/a10.1002/trc2.12118Brain health registry GenePool study: A novel approach to online genetics researchJuliet Fockler0Winnie Kwang1Miriam T. Ashford2Derek Flenniken3Joshua Hwang4Diana Truran5R. Scott Mackin6Chengshi Jin7Ruth O'Hara8Joachim F. Hallmayer9Jerome A. Yesavage10Michael W. Weiner11Rachel L. Nosheny12VA Advanced Imaging Research Center San Francisco Veteran's Administration Medical Center San Francisco California USAVA Advanced Imaging Research Center San Francisco Veteran's Administration Medical Center San Francisco California USAVA Advanced Imaging Research Center San Francisco Veteran's Administration Medical Center San Francisco California USAVA Advanced Imaging Research Center San Francisco Veteran's Administration Medical Center San Francisco California USAVA Advanced Imaging Research Center San Francisco Veteran's Administration Medical Center San Francisco California USAVA Advanced Imaging Research Center San Francisco Veteran's Administration Medical Center San Francisco California USAVA Advanced Imaging Research Center San Francisco Veteran's Administration Medical Center San Francisco California USASan Francisco Department of Biostatistics and Epidemiology University of California, San Francisco San Francisco California USADepartment of Psychiatry and Behavioral Sciences Stanford University Stanford California USADepartment of Psychiatry and Behavioral Sciences Stanford University Stanford California USADepartment of Psychiatry and Behavioral Sciences Stanford University Stanford California USAVA Advanced Imaging Research Center San Francisco Veteran's Administration Medical Center San Francisco California USAVA Advanced Imaging Research Center San Francisco Veteran's Administration Medical Center San Francisco California USAAbstract Introduction Remote data collection, including the establishment of online registries, is a novel approach to efficiently identify risk for cognitive decline and Alzheimer's disease (AD) in older adults, with growing evidence for feasibility and validity. Addition of genetic data to online registries has the potential to facilitate identification of older adults at risk and to advance the understanding of genetic contributions to AD. Methods 573 older adult participants with longitudinal online Brain Health Registry (BHR) data underwent apolipoprotein E (APOE) genotyping using remotely collected saliva samples and a novel, automated Biofluid Collection Management Portal. We evaluated acceptability of genetic sample collection and estimated associations between (1) sociodemographic variables and willingness to participate in genetics research and (2) APOE results and online cognitive and functional assessments. We also assessed acceptance of hypothetical genetics research participation by surveying a larger sample of 25,888 BHR participants. Results 51% of invited participants enrolled in the BHR genetics study, BHR‐GenePool Study (BHR‐GPS); 27% of participants had at least one APOE ε4 allele. Older participants and those with higher educational attainment were more likely to participate. In the remotely administered Cogstate Brief Battery, APOE ε4/ε4 homozygotes (HM) had worse online learning scores, and greater decline in processing speed and attention, compared to ε3/ε4 heterozygotes (HT) and ε4 non‐carriers (NC). Discussion APOE genotyping of more than 500 older adults enrolled in BHR supports the feasibility and validity of a novel, remote biofluids collection approach from a large cohort of older adults, with data linkage to longitudinal online cognitive data. This approach can be expanded for efficient collection of genetic data and other information from biofluids in the future.https://doi.org/10.1002/trc2.12118aging researchAlzheimer's diseaseapolipoprotein EBrain Health Registrygeneticsinternet
spellingShingle Juliet Fockler
Winnie Kwang
Miriam T. Ashford
Derek Flenniken
Joshua Hwang
Diana Truran
R. Scott Mackin
Chengshi Jin
Ruth O'Hara
Joachim F. Hallmayer
Jerome A. Yesavage
Michael W. Weiner
Rachel L. Nosheny
Brain health registry GenePool study: A novel approach to online genetics research
Alzheimer’s & Dementia: Translational Research & Clinical Interventions
aging research
Alzheimer's disease
apolipoprotein E
Brain Health Registry
genetics
internet
title Brain health registry GenePool study: A novel approach to online genetics research
title_full Brain health registry GenePool study: A novel approach to online genetics research
title_fullStr Brain health registry GenePool study: A novel approach to online genetics research
title_full_unstemmed Brain health registry GenePool study: A novel approach to online genetics research
title_short Brain health registry GenePool study: A novel approach to online genetics research
title_sort brain health registry genepool study a novel approach to online genetics research
topic aging research
Alzheimer's disease
apolipoprotein E
Brain Health Registry
genetics
internet
url https://doi.org/10.1002/trc2.12118
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