Using AD biomarker research results for clinical care: a survey of ADNI investigators.

ABSTRACT:

Objective

To inform whether the Alzheimer's Disease Neuroimaging Initiative (ADNI) should change its policy of not returning research results to ADNI participants, we surveyed investigators and research staff about disclosing ADNI biomarker information to research participants, with particular emphasis on amyloid imaging results.

Methods

In April 2012, just before Food and Drug Administration approval of the amyloid-binding radiotracer, florbetapir, all ADNI investigators and personnel were recruited to complete an anonymous online survey that contained fixed choice and free-text questions.

Results

Although ADNI participants often requested amyloid imaging results (the proportions of investigators who reported requests from more than half of their participants with no

SUBMITTER: Shulman MB 

PROVIDER: S-EPMC3795601 | biostudies-literature | 2013 Sep

REPOSITORIES: biostudies-literature