Evidence map›Paper›PMID 37574732›Full record

ArticleJournal of Alzheimer's disease : JAD2023

"I Want to Know Everything ...  ": The Return of Research Results and the Importance of Transparency in the Acceptability of Lumbar Punctures for African American Older Adults.

Susan Racine Passmore, Colin Longhurst, Abigail Gerbitz, Gina Green-Harris, Nia Norris, Dorothy Farrar Edwards

Open access · greenAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of Alzheimer's disease : JAD, 2023. 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
1.4field-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

7 citing papers in PubMed, 5 citations in OpenAlex.

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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

6 authors at 2 institutions in 1 country.

Susan Racine PassmoreCollaborative Center for Health Equity, Institute for Clinical and Translational Research, School of Medicine and Public Health, University of Wisconsin, Madison, WI, USA.
Colin LonghurstDepartment of Biostatistics and Medical Informatics, School of Medicine and Public Health, University of Wisconsin, Madison, WI, USA.
Abigail GerbitzCollaborative Center for Health Equity, Institute for Clinical and Translational Research, School of Medicine and Public Health, University of Wisconsin, Madison, WI, USA.
Gina Green-HarrisCenter for Community Engagement and Health Partnerships, School of Medicine and Public Health, University of Wisconsin, Madison, WI, USA.
Nia NorrisDepartment of Medicine, School of Medicine and Public Health, University of Wisconsin, Madison, WI, USA.
Dorothy Farrar EdwardsCollaborative Center for Health Equity, Institute for Clinical and Translational Research, School of Medicine and Public Health, University of Wisconsin, Madison, WI, USA.
University of Wisconsin–Madison · USHealthPartners · US

Funding

University of Wisconsin Institute for Clinical and Translational ResearchUL1TR002373 · NCATS · UNIVERSITY OF WISCONSIN-MADISON · PI ELIZABETH S BURNSIDE, Allan R. Brasier · 2017 to 2026
$75.9M
Wisconsin Alzheimer's Disease Research CenterP30AG062715 · NIA · UNIVERSITY OF WISCONSIN-MADISON · PI Sanjay Asthana · 2019 to 2026
$34.5M
Feasibility of an Innovative Method to Understand the Dynamics of Choice and Create Diversity in Genomics Research among Older African AmericansR21HG011503 · NHGRI · UNIVERSITY OF WISCONSIN-MADISON · PI PASSMORE, SUSAN RACINE · 2020 to 2021
$363k
NCATS NIH HHS UL1 TR002373NHGRI NIH HHS R21 HG011503NIA NIH HHS P30 AG062715
6 · The paper itself

Abstract

backgroundAlthough African Americans experience the highest risk of Alzheimer's disease (AD), they are dramatically underrepresented in preclinical biomarker research. This is especially true for studies involving lumbar puncture as it may involve more perceived risk even for those participants who are otherwise supportive of research.

objectiveTo understand the unique concerns of African American participants regarding biomarker studies involving lumbar puncture who demonstrate support for AD research.

methodsStudy participants were African American adults contacted through an AD research registry. We employed a novel method used to create hypothetical research studies varying on a set number of factors. The method is designed to collect potential patterns in decision making regarding research participation but differs from experimental vignette design in that the survey is administered with an accompanying qualitive interview to determine the meaning participants ascribe to factors independently and in conjunction with one another.

resultsSixty-one participants each reviewed three randomly selected research scenarios and created their "ideal" study involving lumbar puncture. Scenario variables included: disclosure of research results, racial and ethnic identity of the researcher, recruitment method, and amount of incentive.

conclusionFindings indicate that transparency in the return of AD research results to be the strongest driver of participation, followed by race of the researcher and amount of incentive. Recruitment method had limited impact on hypothetical decision making.

Indexed as

Alzheimer DiseaseBiomedical ResearchBlack or African AmericanPatient Acceptance of Health CareSpinal PunctureAgedBiomarkersDisclosureHumansPatient ParticipationRandom AllocationSurveys and QuestionnairesBiomarkersAlzheimer’s diseaseBlack or African Americanethicshealthhealth equity

Identifiers

PMID37574732
PMCPMC10637283
OpenAlexW4385789856

What OpenQuestion 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 OpenQuestion graph.