Disclosure of individual research results at federally funded Alzheimer's Disease Research Centers.
biomarkers
genetic testing
research ethics
return of research results
risk communication
Journal
Alzheimer's & dementia (New York, N. Y.)
ISSN: 2352-8737
Titre abrégé: Alzheimers Dement (N Y)
Pays: United States
ID NLM: 101650118
Informations de publication
Date de publication:
2021
2021
Historique:
entrez:
25
10
2021
pubmed:
26
10
2021
medline:
26
10
2021
Statut:
epublish
Résumé
This study describes practices for disclosing individual research results to participants in Alzheimer's disease research. An online survey of clinical core leaders at National Institutes of Health-funded Alzheimer's Disease Research Centers in the United States (response rate: 30/31, 97%) examined return of results practices across nine different types of research results. Most centers had returned consensus research diagnoses (83%) and neuropsychological test results (73%), with fewer having shared amyloid positron emission tomography (43%), tau imaging (10%), or apolipoprotein E ( Centers varied widely as to whether and how they disclosed research results. Diagnostic and cognitive test results were more commonly returned than genetic or biomarker results.
Identifiants
pubmed: 34692986
doi: 10.1002/trc2.12213
pii: TRC212213
pmc: PMC8515553
doi:
Types de publication
Journal Article
Langues
eng
Pagination
e12213Subventions
Organisme : NIA NIH HHS
ID : P30 AG072931
Pays : United States
Informations de copyright
© 2021 The Authors. Alzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring published by Wiley Periodicals, LLC on behalf of Alzheimer's Association.
Déclaration de conflit d'intérêts
The authors report no financial conflicts of interest. Dr. Roberts has served as a paid advisory board member for the national Alzheimer's Clinical Trials Consortium and NIH‐funded research projects based at Indiana University (U01 AG057195), Washington University (R01AG065234), and Children's National Medical Center (R01 HD095068). He also serves in an unpaid role as co‐chair of the Michigan Dementia Coalition. Dr. Blacker and Ms. Rumbaugh serve in unpaid roles as co‐chairs of the Asymptomatic Subcommittee of the Advisory Group on Risk Evidence Education for Dementia. Dr. Grill has served in an unpaid role on an advisory board convened by the National Institute on Aging. Ms. Ferber reports no relevant disclosures. Dr. Blacker has received consulting fees for legal consultation from Saul Ewing Arnstein & Lehr, LLP, and the estate of Barbara Bartle; and for epidemiology forecasting from Biogen (2015‐18). Dr. Grill has received consulting fees from SiteRx, Flint Rehab, and Cogniciti. Dr. Roberts has received payment from the National Institutes of Health for scientific review activities.
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