Evidence map›Paper›PMID 41342684›Full record

ArticleJournal of Alzheimer's disease : JAD2026

Experiences of participant burden in an Alzheimer's disease research center longitudinal cohort.

Theresa F Gierzynski, Jonathan M Reader, Bernardo Flores, Joshua T Fox-Fuller, Renee Gadwa, Arijit Bhaumik, Judith Heidebrink, Bruno Giordani, Benjamin M Hampstead, Kelly M Bakulski and 3 more

Abstract read
In one paragraph

Article in Journal of Alzheimer's disease : JAD, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing 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

2 citing papers in PubMed.

  1. Review
  2. 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.

Theresa F GierzynskiMichigan Alzheimer's Disease Research Center, University of Michigan, Ann Arbor, MI, USA.ORCID 0000-0003-1948-2401
Jonathan M ReaderMichigan Alzheimer's Disease Research Center, University of Michigan, Ann Arbor, MI, USA.
Bernardo FloresMichigan Alzheimer's Disease Research Center, University of Michigan, Ann Arbor, MI, USA.ORCID 0009-0004-6234-544X
Joshua T Fox-FullerMichigan Alzheimer's Disease Research Center, University of Michigan, Ann Arbor, MI, USA.
Renee GadwaMichigan Alzheimer's Disease Research Center, University of Michigan, Ann Arbor, MI, USA.
Arijit BhaumikMichigan Alzheimer's Disease Research Center, University of Michigan, Ann Arbor, MI, USA.
Judith HeidebrinkMichigan Alzheimer's Disease Research Center, University of Michigan, Ann Arbor, MI, USA.
Bruno GiordaniMichigan Alzheimer's Disease Research Center, University of Michigan, Ann Arbor, MI, USA.
Benjamin M HampsteadMichigan Alzheimer's Disease Research Center, University of Michigan, Ann Arbor, MI, USA.
Kelly M BakulskiMichigan Alzheimer's Disease Research Center, University of Michigan, Ann Arbor, MI, USA.ORCID 0000-0002-9605-6337
Henry PaulsonMichigan Alzheimer's Disease Research Center, University of Michigan, Ann Arbor, MI, USA.ORCID 0000-0002-0382-7535
J Scott RobertsMichigan Alzheimer's Disease Research Center, University of Michigan, Ann Arbor, MI, USA.
Annalise Rahman-FilipiakMichigan Alzheimer's Disease Research Center, University of Michigan, Ann Arbor, MI, USA.ORCID 0000-0001-6711-6356

Funding

Research Education ComponentP30AG072931 · NIA · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI Scott ROBERTS · 2021 to 2026
$26.5M
Behavioral Change Following Culturally-Informed Biomarker Disclosure in Alzheimer’s DiseaseK23AG070044 · NIA · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI RAHMAN-FILIPIAK, ANNALISE · 2021 to 2025
$914k
NIA NIH HHS K23 AG070044NIA NIH HHS P30 AG072931
6 · The paper itself

Abstract

BackgroundParticipant attrition can compromise the statistical power and generalizability of research results. Prior investigations have shown that perceptions of higher research burden are positively associated with participant withdrawal from longitudinal studies.ObjectiveWe measured participants' perceived burden in a cohort of older adult research participants enrolled in a longitudinal study of memory and aging at the Michigan Alzheimer's Disease Research Center (MADRC).MethodsParticipants completed a modified, 22-item version of the Perceived Research Burden Assessment (PeRBA), which quantitatively measures perceptions of research burden. We performed a multiple linear regression analysis to ascertain the associations between individual participant characteristics (e.g., demographic, clinical, and logistical/socioecological factors) and ratings of perceived research burden.ResultsA total of 300 participants completed the PeRBA. Overall burden was relatively low (mean = 36.6, SD = 9.38), with possible scores ranging from 22-110. Participants who self-identified as Black/African American reported significantly higher levels of perceived research burden relative to participants who self-identified as non-Hispanic White (

Indexed as

Alzheimer DiseaseCost of IllnessAgedAged, 80 and overCohort StudiesFemaleHumansLongitudinal StudiesMaleMichiganMiddle AgedAlzheimer's diseasehuman subject researchlongitudinal researchparticipant retentionresearch burden

Identifiers

PMID41342684
PMCPMC12766564

What OpenQuestion holds

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Registered trials

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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.