An article was recently published in Alzheimer’s & Dementia: Translational Research & Clinical Interventions, which describes the results of an online survey of clinical core leaders at National Institutes of Health-funded Alzheimer’s Disease Research Centers (ADRCs) in the United States. The survey examined how individual centers within this national network are addressing a range of issues related to the return of research results in their longitudinal cohort studies. The findings indicate that many ADRCs are disclosing a range of individual research results to their participants, with diagnostic and neuropsychological assessment findings more commonly returned than genetic or biomarker results. There was considerable variability across centers regarding the return of results, including types of results disclosed, professionals involved in results disclosure, and practices used when returning results. The full article can be accessed below.

Roberts JS, Ferber R, Blacker D, Rumbaugh M, Grill J, for the Advisory Group on Risk Evidence Education for Dementia (AGREED) (2021). Disclosure of individual research results at federally funded Alzheimer’s Disease Research Centers. Alzheimer’s & Dementia: Translational Research & Clinical Interventions, 7:e12213.