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Disclosure of individual research results at federally funded Alzheimer's Disease Research Centers.
Published Web Locationhttps://doi.org/10.1002/trc2.12213
IntroductionThis study describes practices for disclosing individual research results to participants in Alzheimer's disease research.
MethodsAn 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.
ResultsMost 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.
DiscussionCenters 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.
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