Evidence map›Paper›PMID 37797205›Full record

ArticleAlzheimer's & dementia : the journal of the Alzheimer's Association2024

Brain Health Registry Study Partner Portal: Novel infrastructure for digital, dyadic data collection.

Anna Aaronson, Miriam T Ashford, Chengshi Jin, Jessica Bride, Josephine Decker, Aaron DeNicola, Robert W Turner, Catherine Conti, Rachana Tank, Diana Truran and 10 more

Abstract read
In one paragraph

Article in Alzheimer's & dementia : the journal of the Alzheimer's Association, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.

0numbers the graph read from it
0cells of the map it votes in
7citing papers in PubMed
–field-weighted citation impact
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

7 citing papers in PubMed.

  1. Article
  2. Article
  3. Observational
  4. The ADNI Administrative Core: Ensuring ADNI's success and informing future AD clinical trials.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2024
    Article
  5. Brain Health Registry Study Partner Portal: Novel infrastructure for digital, dyadic data collection.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2024
    Article
  6. Review
  7. 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

20 authors.

Anna AaronsonVA Advanced Imaging Research Center, San Francisco Veteran's Administration Medical Center, San Francisco, California, USA.ORCID 0000-0002-5231-9684
Miriam T AshfordVA Advanced Imaging Research Center, San Francisco Veteran's Administration Medical Center, San Francisco, California, USA.
Chengshi JinDepartment of Epidemiology and Biostatistics, University of California San Francisco, San Francisco, California, USA.
Jessica BrideDepartment of Clinical Research and Leadership, School of Medicine and Health Sciences, The George Washington University, Washington, DC, USA.
Josephine DeckerDepartment of Clinical Research and Leadership, School of Medicine and Health Sciences, The George Washington University, Washington, DC, USA.
Aaron DeNicolaDepartment of Clinical Research and Leadership, School of Medicine and Health Sciences, The George Washington University, Washington, DC, USA.
Robert W TurnerDepartment of Clinical Research and Leadership, School of Medicine and Health Sciences, The George Washington University, Washington, DC, USA.
Catherine ContiVA Advanced Imaging Research Center, San Francisco Veteran's Administration Medical Center, San Francisco, California, USA.
Rachana TankVA 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.
Monica R CamachoVA Advanced Imaging Research Center, San Francisco Veteran's Administration Medical Center, San Francisco, California, USA.
Juliet FocklerVA 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.
Aaron UlbrichtVA Advanced Imaging Research Center, San Francisco Veteran's Administration Medical Center, San Francisco, California, USA.
Joshua D GrillDepartments of Psychiatry & Human Behavior and Neurobiology & Behavior, Institute for Memory Impairments and Neurological Disorders, University of California Irvine, Irvine, California, USA.
Gil RabinoviciDepartment of Radiology and Biomedical Imaging, University of California San Francisco, San Francisco, California, USA.
Maria C CarrilloAlzheimer's Association, Chicago, Illinois, USA.
R Scott MackinVA Advanced Imaging Research Center, San Francisco Veteran's Administration Medical Center, San Francisco, 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.

Funding

Project 1U19AG024904 · NIA · NORTHERN CALIFORNIA INSTITUTE/RES/EDU · PI Paul S. Aisen · 2016 to 2026
$226.7M
The Alzheimer's Clinical Trial Consortium - Down Syndrome Network (ACTC- DSN)U24AG057437 · NIA · UNIVERSITY OF SOUTHERN CALIFORNIA · PI Paul S. Aisen, RONALD C PETERSEN · 2018 to 2026
$198.4M
Early Onset AD Consortium - the LEAD Study (LEADS)U01AG057195 · NIA · INDIANA UNIVERSITY INDIANAPOLIS · PI APOSTOLOVA, LIANA G, CARRILLO, MARIA C · 2018 to 2023
$70.3M
Trial-Ready Cohort for Preclinical/Prodromal Alzheimer's DiseaseR01AG053798 · NIA · UNIVERSITY OF SOUTHERN CALIFORNIA · PI AISEN, PAUL S., CUMMINGS, JEFFREY L. · 2017 to 2022
$39.4M
Research Education ComponentP30AG062422 · NIA · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI Serggio Carlo Lanata · 2019 to 2026
$36.9M
The MobileToolbox for Monitoring Cognitive Function - Technical CoreU2CAG060426 · NIA · NORTHWESTERN UNIVERSITY AT CHICAGO · PI RICHARD GERSHON · 2018 to 2026
$35.0M
Establishing the science behind Alzheimer's recruitment registries: opportunities for increasing diversity and accelerating enrollment into trialsR01AG063954 · NIA · BANNER HEALTH · PI BLEAKLEY, AMY, LANGBAUM, JESSICA BROOKE · 2019 to 2023
$9.6M
Validation of Online Methods to Predict and Monitor Cognitive DeclineRF1AG059009 · NIA · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI NOSHENY, RACHEL LAUREN · 2018 to 2018
$6.2M
Reimagining Precision Medicine Approaches to AD DiagnosisR35AG072362 · NIA · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI POSSIN, KATHERINE LAUREL, RABINOVICI, GIL DAN · 2021 to 2025
$4.8M
Risk for Later-Life Cognitive Impairment, Neurobehavioral Dysregulation, and Dementia in Former Soccer and American Football Players: The Head Impact and Trauma Surveillance Study (HITSS)R01NS119651 · NINDS · BOSTON UNIVERSITY MEDICAL CAMPUS · PI ALOSCO, MICHAEL · 2021 to 2025
$3.9M
Predicting populations at-risk of developing pathological hoardingR01MH117114 · NIMH · UNIVERSITY OF FLORIDA · PI MACKIN, ROBERT SCOTT, MATHEWS, CAROL A · 2018 to 2022
$3.7M
Multimodal MRI Characteristics of Psychotherapy Response in Late Life DepressionR01MH101472 · NIMH · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI MACKIN, ROBERT SCOTT, TOSUN-TURGUT, DUYGU · 2015 to 2019
$3.3M
Alzheimer's Association BHR-16-459161NIA NIH HHS F32 AG072730NIA NIH HHS K01 AG054762NIA NIH HHS K01 AG055692NIA NIH HHS P30 AG062422NIA NIH HHS R01 AG053798NIA NIH HHS R01 AG063954NIA NIH HHS R33 AG062867NIA NIH HHS R35 AG072362NIA NIH HHS RF1 AG059009NIA NIH HHS U01 AG057195NIA NIH HHS U19 AG024904NIA NIH HHS U24 AG057437NIA NIH HHS U2C AG060426NIH HHS F32AG072730-01NIH HHS K01AG055692NIH HHS R33AG062867NIMH NIH HHS R01 MH101472NIMH NIH HHS R01 MH117114NIMH NIH HHS RF1 MH125928NINDS NIH HHS R01 NS119651NINDS NIH HHS R21 NS120629
6 · The paper itself

Abstract

backgroundIn Alzheimer's disease (AD) research, subjective reports of cognitive and functional decline from participant-study partner dyads is an efficient method of assessing cognitive impairment and clinical progression.

methodsDemographics and subjective cognitive/functional decline (Everyday Cognition Scale [ECog]) scores from dyads enrolled in the Brain Health Registry (BHR) Study Partner Portal were analyzed. Associations between dyad characteristics and both ECog scores and study engagement were investigated.

resultsA total of 10,494 BHR participants (mean age = 66.9 ± 12.16 standard deviations, 67.4% female) have enrolled study partners (mean age = 64.3 ± 14.3 standard deviations, 49.3% female), including 8987 dyads with a participant 55 years of age or older. Older and more educated study partners were more likely to complete tasks and return for follow-up. Twenty-five percent to 27% of older adult participants had self and study partner-report ECog scores indicating a possible cognitive impairment. DISCUSSION: The BHR Study Partner Portal is a unique digital tool for capturing dyadic data, with high impact applications in the clinical neuroscience and AD fields. Highlights The Brain Health Registry (BHR) Study Partner Portal is a novel, digital platform of >10,000 dyads. Collection of dyadic online subjective cognitive and functional data is feasible. The portal has good usability as evidenced by positive study partner feedback. The portal is a potential scalable strategy for cognitive impairment screening in older adults.

Indexed as

Alzheimer DiseaseCognitive DysfunctionAgedBrainFemaleHumansMaleMiddle AgedRegistriesaging researchAlzheimer's diseaseBrain Health Registrydementiadiversitydyadic reportinternetinternet registryonlineremote assessmentsubjective cognitive decline

Identifiers

PMID37797205
PMCPMC10916998

What Socratic holds

Textmetadata
LicenceTDM
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 Socratic graph.