Roberts, J. ScottFerber, RebeccaBlacker, DeborahRumbaugh, MaliaGrill, Joshua D.2023-03-232023-03-232021-10-14Roberts JS, Ferber R, Blacker D, Rumbaugh M, Grill JD; Advisory Group on Risk Evidence Education for Dementia (AGREED). Disclosure of individual research results at federally funded Alzheimer's Disease Research Centers. Alzheimers Dement (N Y). 2021;7(1):e12213. Published 2021 Oct 14. doi:10.1002/trc2.12213https://hdl.handle.net/1805/32045Introduction: This study describes practices for disclosing individual research results to participants in Alzheimer's disease research. Methods: 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. 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 (APOE) genotype (7%) results. Centers reported having disclosed a mean of 3.1 types of results (standard deviation = 2.1; range 0-8). The most commonly cited reason for disclosure was to inform participants' medical decision-making (88%). Disclosure involved multiple professionals and modalities, with neurologists (87%) and in-person visits (85%) most commonplace. Discussion: 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.en-USAttribution-NonCommercial-NoDerivatives 4.0 InternationalBiomarkersGenetic testingResearch ethicsReturn of research resultsRisk communicationArticle