Evidence map›Paper›PMID 33614891›Full record

ArticleAlzheimer's & dementia (New York, N. Y.)2021

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

Juliet Fockler, Winnie Kwang, Miriam T Ashford, Derek Flenniken, Joshua Hwang, Diana Truran, R Scott Mackin, Chengshi Jin, Ruth O'Hara, Joachim F Hallmayer and 3 more

Open access · goldAbstract read
In one paragraph

Article in Alzheimer's & dementia (New York, N. Y.), 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers.

0numbers the graph read from it
0cells of the map it votes in
10citing papers in PubMed
1.1field-weighted citation impact, top 25% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

10 citing papers in PubMed, 15 citations in OpenAlex.

  1. Article
  2. Theory-Based Message Design for Recruitment of Underrepresented Racial/Ethnic Groups Into Alzheimer's-Focused Research Registries.Health education & behavior : the official publication of the Society for Public Health Education · 2025
    Article
  3. Article
  4. Article
  5. Article
  6. Article
  7. Brain health registry updates: An online longitudinal neuroscience platform.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2023
    Article
  8. Article
  9. Article
  10. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

13 authors at 5 institutions in 1 country.

Juliet FocklerVA Advanced Imaging Research Center San Francisco Veteran's Administration Medical Center San Francisco California USA.
Winnie KwangVA Advanced Imaging Research Center San Francisco Veteran's Administration Medical Center San Francisco California USA.
Miriam T AshfordVA Advanced Imaging Research Center San Francisco Veteran's Administration Medical Center San Francisco California USA.
Derek FlennikenVA Advanced Imaging Research Center San Francisco Veteran's Administration Medical Center San Francisco California USA.
Joshua HwangVA Advanced Imaging Research Center San Francisco Veteran's Administration Medical Center San Francisco California USA.
Diana TruranVA Advanced Imaging Research Center San Francisco Veteran's Administration Medical Center San Francisco California USA.
R Scott MackinVA Advanced Imaging Research Center San Francisco Veteran's Administration Medical Center San Francisco California USA.
Chengshi JinSan Francisco Department of Biostatistics and Epidemiology University of California, San Francisco San Francisco California USA.
Ruth O'HaraDepartment of Psychiatry and Behavioral Sciences Stanford University Stanford California USA.
Joachim F HallmayerDepartment of Psychiatry and Behavioral Sciences Stanford University Stanford California USA.
Jerome A YesavageDepartment of Psychiatry and Behavioral Sciences Stanford University Stanford California USA.
Michael W WeinerVA Advanced Imaging Research Center San Francisco Veteran's Administration Medical Center San Francisco California USA.
Rachel L NoshenyVA Advanced Imaging Research Center San Francisco Veteran's Administration Medical Center San Francisco California USA.
Advanced Imaging Research (United States) · USSan Francisco VA Medical Center · USStanford University · USUniversity of California, San Francisco · USUniversity of San Francisco · US

Funding

Stanford Medicine Center for Longevity and Healthy Aging Research Education CoreP30AG059307 · NIA · STANFORD UNIVERSITY · PI ZOU, JAMES · 2018 to 2025
$4.9M
The Brain Health Registry for facilitating interdisciplinary aging researchR33AG062867 · NIA · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI NOSHENY, RACHEL LAUREN · 2020 to 2024
$3.2M
Implementation and validation of an online Caregiver and Study Partner Portal for assessment of cognitive function in older adultsK01AG055692 · NIA · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI NOSHENY, RACHEL LAUREN · 2017 to 2021
$719k
NIA NIH HHS K01 AG055692NIA NIH HHS P30 AG059307NIA NIH HHS R33 AG062867
6 · The paper itself

Abstract

introductionRemote 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.

methods573 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.

results51% 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.

Indexed as

aging researchAlzheimer's diseaseapolipoprotein EBrain Health Registrygeneticsinternetresearch registry

Identifiers

PMID33614891
PMCPMC7882536
OpenAlexW3133487757

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.