Recommended approaches to sharing individual research results in Alzheimer's disease research: A multidisciplinary expert Delphi consensus

BackgroundAs criteria for diagnosing Alzheimer's disease and Alzheimer's disease related dementias (AD/ADRD) evolves, AD-related biological measures of biomarkers (e.g., amyloid, tau) and genetic status (e.g., <i>APOE</i>) have gained heightened value in research, and, notably, increased personal significance for participants.ObjectiveTo identify recommended approaches for sharing individual research results with participants in AD/ADRD research and determine expert consensus on best practices for sharing individual research results to participants in AD/ADRD research.MethodsThis online, modified Delphi study consisted of four rounds of surveys conducted with Alzheimer's disease research experts, including neurologists, ethicists, neuropsychologists, geneticists, clinical trialists, and other research stakeholders. The Delphi survey was informed by a targeted literature review of previously published recommendations on sharing individual research results in AD/ADRD research. A total of 81 experts were surveyed across all rounds, ranking statements on a 7-point Likert scale and providing feedback in short answer responses. After each round, feedback reports were shared to inform subsequent responses. Proportion of agreement and qualitative feedback were analyzed, with consensus defined as 75% or greater agreement.Results41 initial statements were evaluated and refined based on consensus and feedback. Concluding the final round (round 3), consensus (≥75% agreement) was achieved on 25 statements, resulting in a set of recommendations related to: study design, clinical relevance, results sharing processes, communication and understanding of results, counseling and support, and follow-up.ConclusionsThe findings of this online, modified Delphi study provide a foundation for developing standardized, ethically grounded practices for returning individual research results in Alzheimer's disease studies.

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Publication Details

Journal
Journal of Alzheimer s Disease
Published
2025-09-25
DOI
https://doi.org/10.1177/13872877251379076
Citations
2
Primary Topic
Delphi Technique in Research
Type
article
Field-Weighted Citation Impact
8.40
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article

Recommended approaches to sharing individual research results in Alzheimer's disease research: A multidisciplinary expert Delphi consensus

Claire M Erickson, Paul J. Ford, Chenlu Gao, Nicole R. Fowler et al.
2 citations
Journal of Alzheimer s Disease
Delphi Technique in Research
8.40
article

Recommended approaches to sharing individual research results in Alzheimer's disease research: A multidisciplinary expert Delphi consensus

Claire M Erickson, Paul J. Ford, Chenlu Gao, Nicole R. Fowler, Megan Zelinsky, Lauren R. Sankary, Jalayne J. Arias, Corinna Porteri, Kris Dierickx, Alyssa A. Brewer, Cristina Festari, Jill K. Morris, Yaakov Stern, Corey J. Bolton, Marco Toccaceli Blasi, Edo Richard, Kim G. Johnson, James B. Leverenz, Chenxi Qiu, Tracy Butler, Jagan A. Pillai, Babak Tousi, Fasihah Irfani Fitri, Alan J. Lerner, Sarah Walter, Shanna Trenaman, Jeffrey Murray Burns, Annalise Rahman‐Filipiak, Zahra Rahemi, Kristine Williams, Jolien Schaeverbeke, Kathryn Anne Martinez, Michael D. Gallagher, Christine Suver, Justin B. Miller, Katie Wells, Valerie Rico, Rik Vandenberghe, Liana G. Apostolova, Seth A. Gale
article en
2 citations

Abstract

BackgroundAs criteria for diagnosing Alzheimer's disease and Alzheimer's disease related dementias (AD/ADRD) evolves, AD-related biological measures of biomarkers (e.g., amyloid, tau) and genetic status (e.g., <i>APOE</i>) have gained heightened value in research, and, notably, increased personal significance for participants.ObjectiveTo identify recommended approaches for sharing individual research results with participants in AD/ADRD research and determine expert consensus on best practices for sharing individual research results to participants in AD/ADRD research.MethodsThis online, modified Delphi study consisted of four rounds of surveys conducted with Alzheimer's disease research experts, including neurologists, ethicists, neuropsychologists, geneticists, clinical trialists, and other research stakeholders. The Delphi survey was informed by a targeted literature review of previously published recommendations on sharing individual research results in AD/ADRD research. A total of 81 experts were surveyed across all rounds, ranking statements on a 7-point Likert scale and providing feedback in short answer responses. After each round, feedback reports were shared to inform subsequent responses. Proportion of agreement and qualitative feedback were analyzed, with consensus defined as 75% or greater agreement.Results41 initial statements were evaluated and refined based on consensus and feedback. Concluding the final round (round 3), consensus (≥75% agreement) was achieved on 25 statements, resulting in a set of recommendations related to: study design, clinical relevance, results sharing processes, communication and understanding of results, counseling and support, and follow-up.ConclusionsThe findings of this online, modified Delphi study provide a foundation for developing standardized, ethically grounded practices for returning individual research results in Alzheimer's disease studies.

Journal of Alzheimer s DiseaseVol. 108(2)
University of Southern California (US), Brigham and Women's Hospital (US), Dalhousie University (CA), Allen Institute for Brain Science (US), Beth Israel Deaconess Medical Center (US), Cleveland Clinic (US), Sage Bionetworks (US), Radboud University Nijmegen (NL), Duke University (US), Georgia State University (US), University of Washington (US), University of California, Irvine (US), Cornell University (US), Universitas Sumatera Utara (ID), University of Michigan (US), Lou Ruvo Brain Institute (US), Massachusetts General Hospital (US), Michigan Medicine (US), Centro San Giovanni di Dio Fatebenefratelli (IT), University of Kansas Medical Center (US), Georgia Department of Public Health (US), Neuroelectronics Research Flanders (BE), Duke University Hospital (US), VIB-KU Leuven Center for Brain & Disease Research (BE), Whitehead Institute for Biomedical Research (US), Neurological Surgery (US), The Neurological Institute (US), Banner Alzheimer’s Institute, Weill Cornell Medicine (US), Indiana University School of Medicine, Indiana University – Purdue University Indianapolis (US), Case Western Reserve University (US), University of Missouri–Kansas City (US), Columbia University (US), Clemson University (US), Sapienza University of Rome (IT), The University of Texas Southwestern Medical Center (US), Vanderbilt University Medical Center (US), University of Edinburgh (GB), KU Leuven (BE)
Openalex Percentile: Top 3%
Delphi Technique in Research
8.40
DOIOpen Access PDFOpenAlex
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