Brain health registry updates: An online longitudinal neuroscience platform.
Alzheimer's disease
Brain Health Registry
aging research
clinical trial recruitment
dementia
diversity
internet
internet registry
neuropsychological tests
neuroscience clinical research studies
online
remote assessment
remote biomarker collection
Journal
Alzheimer's & dementia : the journal of the Alzheimer's Association
ISSN: 1552-5279
Titre abrégé: Alzheimers Dement
Pays: United States
ID NLM: 101231978
Informations de publication
Date de publication:
Nov 2023
Nov 2023
Historique:
revised:
28
02
2023
received:
20
01
2023
accepted:
08
03
2023
pmc-release:
25
09
2024
pubmed:
26
3
2023
medline:
26
3
2023
entrez:
25
3
2023
Statut:
ppublish
Résumé
Remote, internet-based methods for recruitment, screening, and longitudinally assessing older adults have the potential to facilitate Alzheimer's disease (AD) clinical trials and observational studies. The Brain Health Registry (BHR) is an online registry that includes longitudinal assessments including self- and study partner-report questionnaires and neuropsychological tests. New initiatives aim to increase inclusion and engagement of commonly underincluded communities using digital, community-engaged research strategies. New features include multilingual support and biofluid collection capabilities. BHR includes > 100,000 participants. BHR has made over 259,000 referrals resulting in 25,997 participants enrolled in 30 aging and AD studies. In addition, 28,278 participants are coenrolled in BHR and other studies with data linkage among studies. Data have been shared with 28 investigators. Recent efforts have facilitated the enrollment and engagement of underincluded ethnocultural communities. The major advantages of the BHR approach are scalability and accessibility. Challenges include compliance, retention, cohort diversity, and generalizability. Brain Health Registry (BHR) is an online, longitudinal platform of > 100,000 members. BHR made > 259,000 referrals, which enrolled 25,997 participants in 32 studies. New efforts increased enrollment and engagement of underincluded communities in BHR. The major advantages of the BHR approach are scalability and accessibility. BHR provides a unique adjunct for clinical neuroscience research.
Identifiants
pubmed: 36965096
doi: 10.1002/alz.13077
pmc: PMC10518371
mid: NIHMS1893517
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
4935-4951Subventions
Organisme : NIA NIH HHS
ID : F32 AG072730
Pays : United States
Organisme : NINDS NIH HHS
ID : R01 NS119651
Pays : United States
Organisme : NIA NIH HHS
ID : K01 AG055692
Pays : United States
Organisme : NIA NIH HHS
ID : R33 AG062867
Pays : United States
Organisme : NIH HHS
ID : R01 AG063954
Pays : United States
Organisme : NIMH NIH HHS
ID : R01 MH117114
Pays : United States
Organisme : NIH HHS
ID : R01 NS119651
Pays : United States
Organisme : NIMH NIH HHS
ID : R01 MH101472
Pays : United States
Organisme : NIA NIH HHS
ID : RF1 AG059009
Pays : United States
Organisme : NIH HHS
ID : R33 AG062867
Pays : United States
Organisme : NIH HHS
ID : U2C AG060426
Pays : United States
Organisme : NIA NIH HHS
ID : R01 AG063954
Pays : United States
Organisme : NIA NIH HHS
ID : U24 AG057437
Pays : United States
Organisme : NIH HHS
ID : U19 AG024904
Pays : United States
Organisme : NIA NIH HHS
ID : U19 AG024904
Pays : United States
Organisme : NIH HHS
ID : RF1 AG059009
Pays : United States
Organisme : NIMH NIH HHS
ID : RF1 MH125928
Pays : United States
Organisme : NIA NIH HHS
ID : R01 AG053798
Pays : United States
Organisme : NIA NIH HHS
ID : U2C AG060426
Pays : United States
Organisme : NIH HHS
ID : U24 AG057437
Pays : United States
Organisme : NIH HHS
ID : R01 AG053798
Pays : United States
Organisme : NIH HHS
ID : R01 AG053798
Pays : United States
Organisme : NIH HHS
ID : R01 NS119651
Pays : United States
Organisme : NIH HHS
ID : R33 AG062867
Pays : United States
Organisme : NIH HHS
ID : RF1 AG059009
Pays : United States
Organisme : NIH HHS
ID : U2C AG060426
Pays : United States
Organisme : NIH HHS
ID : U19 AG024904
Pays : United States
Organisme : NIH HHS
ID : R01 AG063954
Pays : United States
Organisme : NIH HHS
ID : U24 AG057437
Pays : United States
Informations de copyright
© 2023 The Authors. Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.
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