Disclosure of individual research results at federally funded Alzheimer's Disease Research Centers.

ABSTRACT:

Introduction

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 c

SUBMITTER: Roberts JS 

PROVIDER: S-EPMC8515553 | biostudies-literature | 2021

REPOSITORIES: biostudies-literature