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 in the United States. The survey examined how individual centers within this national network are addressing a range of issues related to return of research results in their own longitudinal cohort studies. The findings indicate that many Alzheimer’s Disease Research Centers 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 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.