Evidence map›Paper›PMID 38456576›Full record

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

Data stewardship in FTLD research: Investigator and research participant views.

Jalayne J Arias, Ana M Tyler, Laura M Beskow, Maria C Carillo, Susan Dickinson, Jill Goldman, Mary A Majumder, Michelle M Mello, Heather M Snyder, Jennifer S Yokoyama

Open access · hybridAbstract read
PubMed Full text at PMC Publisher
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 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
1.6field-weighted citation impact, top 18% 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

1 citing paper in PubMed, 3 citations in OpenAlex.

  1. Data stewardship in FTLD research: Investigator and research participant views.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2024
    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

10 authors at 7 institutions in 1 country.

Jalayne J AriasMemory and Aging Center, Department of Neurology, Weill Institute for Neurosciences, University of California, San Francisco, San Francisco, California, USA.ORCID 0000-0002-6081-5231
Ana M TylerMemory and Aging Center, Department of Neurology, Weill Institute for Neurosciences, University of California, San Francisco, San Francisco, California, USA.
Laura M BeskowCenter for Biomedical Ethics and Society, Vanderbilt University Medical Center, Nashville, Tennessee, USA.
Maria C CarilloDivision of Medical & Scientific Relations, Alzheimer's Association, Chicago, Illinois, USA.
Susan DickinsonThe Association for Frontotemporal Degeneration, King of Prussia, Pennsylvania, USA.
Jill GoldmanNeurological Institute, Columbia University Irving Medical Center, New York, New York, USA.
Mary A MajumderCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas, USA.
Michelle M MelloStanford Law School and Department of Medicine, Stanford University, Palo Alto, California, USA.
Heather M SnyderDivision of Medical & Scientific Relations, Alzheimer's Association, Chicago, Illinois, USA.
Jennifer S YokoyamaMemory and Aging Center, Department of Neurology, Weill Institute for Neurosciences, University of California, San Francisco, San Francisco, California, USA.
University of California, San Francisco · USAlzheimer's Association · USAssociation for Frontotemporal Degeneration · USBaylor College of Medicine · USColumbia University Irving Medical Center · USPalo Alto University · USVanderbilt University Medical Center · US

Funding

TDP-43 Loss-of-Function: Biology to BiomarkersP01AG019724 · NIA · UNIVERSITY OF PENNSYLVANIA · PI Jennifer Merrilees · 2002 to 2026
$67.2M
Project 2: Biomarker Analysis, Non-Genetic Risk Factors, and Their Genetic InteractionsU19AG079774 · NIA · UNIVERSITY OF PENNSYLVANIA · PI LI-SAN WANG · 2023 to 2026
$39.4M
Research Education ComponentP30AG062422 · NIA · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI Gil Dan Rabinovici · 2019 to 2026
$36.9M
Tau Metabolism in FTD: From Gene Mutations to Molecular Chaperones and Lysosomal ProteasesU54NS123985 · NINDS · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI KARCH, CELESTE MARIE · 2021 to 2025
$9.0M
US-South American Initiative for Genetic-Neural-Behavioral Interactions in Human Neurodegenerative ResearchR01AG057234 · NIA · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI Claudia Duran-Aniotz, Agustin M. Ibanez · 2019 to 2026
$6.1M
Elucidating clinical heterogeneity in early-onset AD via genomics, transcriptomics, and neuroimagingR01AG062588 · NIA · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI YOKOYAMA, JENNIFER S · 2019 to 2023
$4.0M
Identifying barriers to optimizing data sharing and accelerate discovery in Alzheimer’s disease and related dementia researchR01AG080093 · NIA · GEORGIA STATE UNIVERSITY · PI Jalayne J Arias · 2023 to 2026
$2.3M
Employment and Insurance Discrimination Based on Biomarkers for Alzheimer's diseaseK01AG057796 · NIA · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI ARIAS, JALAYNE J · 2018 to 2022
$652k
NIA NIH HHS K01 AG057796NIA NIH HHS P01 AG019724NIA NIH HHS P30 AG062422NIA NIH HHS R01 AG057234NIA NIH HHS R01 AG062588NIA NIH HHS R01 AG080093NIA NIH HHS U19 AG079774NIDA NIH HHS 75N95022C00031NINDS NIH HHS U54 NS123985
6 · The paper itself

Abstract

introductionFederal policies and guidelines have expanded the return of individual results to participants and expectations for data sharing between investigators and through repositories. Here, we report investigators' and study participants' views and experiences with data stewardship practices within frontotemporal lobal degeneration (FTLD) research, which reveal unique ethical challenges.

methodsSemi-structured interviews with (1) investigators conducting FTLD research that includes genetic data collection and/or analysis and (2) participants enrolled in a single site longitudinal FTLD study.

resultsAnalysis of the interviews identified three meta themes: perspectives on data sharing, experiences with enrollment and participation, and data management and security as mechanisms for participant protections. DISCUSSION: This study identified a set of preliminary gaps and needs regarding data stewardship within FTLD research. The results offer initial insights on ethical challenges to data stewardship aimed at informing future guidelines and policies.

Indexed as

Frontotemporal Lobar DegenerationAtrophyHumansResearch Personneldata sharingethicsfrontotemporal lobar degenerationpolicy/lawresearch

Identifiers

PMID38456576
PMCPMC11032535
OpenAlexW4392594483

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.