Evidence map›Paper›PMID 41416575›Full record

ArticleAlzheimer's & dementia : the journal of the Alzheimer's Association2025

"Being brave, being seen, and having your voice heard": Perspectives of self-advocates and families toward accessible and impactful research of Alzheimer's disease in down syndrome.

Sarah Walter, Lauren Ptomey, Elizabeth Head, Ann Cohen, Joseph Mike Briones, Henry Shaw, Brandon Carter, Jessica Kishner, Willie Pestolesi, Anthony Sciullo and 11 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Alzheimer's & dementia : the journal of the Alzheimer's Association, 2025. 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
–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

1 citing paper in PubMed.

  1. 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

21 authors.

Sarah WalterAlzheimer's Therapeutic Research Institute, University of Southern California, San Diego, California, USA.ORCID 0000-0002-7849-8553
Lauren PtomeyDepartment of Internal Medicine, The University of Kansas Medical Center, Kansas City, Kansas, USA.
Elizabeth HeadDepartment of Pathology & Laboratory Medicine, and Neurology, School of Medicine, University of California, Irvine, Irvine, California, USA.
Ann CohenAlzheimer's Disease Research Center, University Of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania, USA.
Joseph Mike BrionesAlzheimer's Therapeutic Research Institute, University of Southern California, Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group, San Diego, California, USA.
Henry ShawAlzheimer's Therapeutic Research Institute, University of Southern California, Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group, San Diego, California, USA.
Brandon CarterAlzheimer's Therapeutic Research Institute, University of Southern California, Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group, San Diego, California, USA.
Jessica KishnerAlzheimer's Therapeutic Research Institute, University of Southern California, Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group, San Diego, California, USA.
Willie PestolesiAlzheimer's Therapeutic Research Institute, University of Southern California, Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group, San Diego, California, USA.
Anthony SciulloAlzheimer's Therapeutic Research Institute, University of Southern California, Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group, San Diego, California, USA.
Katy Kolb OlmsteadAlzheimer's Therapeutic Research Institute, University of Southern California, Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group, San Diego, California, USA.
Aurelia CarterAlzheimer's Therapeutic Research Institute, University of Southern California, Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group, San Diego, California, USA.
Sara KishnerAlzheimer's Therapeutic Research Institute, University of Southern California, Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group, San Diego, California, USA.
Amy Kolb TuckerAlzheimer's Therapeutic Research Institute, University of Southern California, Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group, San Diego, California, USA.
Lissa PestolesiAlzheimer's Therapeutic Research Institute, University of Southern California, Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group, San Diego, California, USA.
Maria BrionesAlzheimer's Therapeutic Research Institute, University of Southern California, Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group, San Diego, California, USA.
Dana SciulloAlzheimer's Therapeutic Research Institute, University of Southern California, Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group, San Diego, California, USA.
Kay SciulloAlzheimer's Therapeutic Research Institute, University of Southern California, Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group, San Diego, California, USA.
Pam ShawAlzheimer's Therapeutic Research Institute, University of Southern California, Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group, San Diego, California, USA.
Perry ChenAlzheimer's Therapeutic Research Institute, University of Southern California, San Diego, California, USA.
Michael S RafiiAlzheimer's Therapeutic Research Institute, University of Southern California, San Diego, California, USA.

Funding

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
Biomarkers of Alzheimer's Disease in Adults with Down SyndromeU01AG051412 · NIA · COLUMBIA UNIVERSITY HEALTH SCIENCES · PI LOTT, IRA T., SCHUPF, NICOLE · 2015 to 2019
$26.3M
NiAD Supplement WashU Start UpU01AG051406 · NIA · UNIVERSITY OF PITTSBURGH AT PITTSBURGH · PI HANDEN, BENJAMIN L, LAYMON, CHARLES · 2015 to 2019
$21.3M
Eunice Kennedy Shriver National Institute of Child Health and Human Development U01AG051406Eunice Kennedy Shriver National Institute of Child Health and Human Development U01AG051412NIA NIH HHS U01 AG051406NIA NIH HHS U01 AG051412NIA NIH HHS U24 AG057437US National Institute on Aging
6 · The paper itself

Abstract

introductionOver 220,000 people live with Down syndrome (DS) in the United States, with an average life expectancy of 63.5 years of age. The high risk for Alzheimer's disease (AD) in DS means studies must be accessible and inclusive. We share our experience of building a collaborative group of self-advocates and care partners to provide meaningful feedback on research.

methodsOur research partnership group is supported by the Alzheimer's Clinical Trials Consortium-Down Syndrome (ACTC-DS) and Alzheimer's Biomarker Consortium Down Syndrome (ABC-DS). We synthesize feedback into themes and recommendations for researchers.

resultsFeedback themes are broad, extending from the strong motivation to engage in research to the need to balance study burden and risk. Recommendations for researchers include providing support and connection to resources, sharing individual and study-level results, flexibility, and respectful communication. DISCUSSION: Our collaborative approach will lead to more relevant and accessible research studies. HIGHLIGHTS: Inclusive and accessible research is needed for Down syndrome and Alzheimer's disease. We built a collaborative group of self-advocates and care partners to provide feedback. Feedback includes a strong motivation to learn about brain health and engage in research. Respectful communication includes representative images and tailored materials. Recommendations include the choice to learn individual results, flexibility, and support.

Indexed as

Alzheimer DiseaseBiomedical ResearchDown SyndromeFamilyPatient AdvocacyHumansAlzheimer's diseasebiomarkersclinical trialscommunity advisory boardcommunity engagementDown syndromegenetic riskintellectual disabilitylived experienceobservational studiespartnershipreturn of resultsunderserved communities

Identifiers

PMID41416575
PMCPMC12715699

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.