This article examines investigators' opinions on changing the Alzheimer’s Disease Neuroimaging Initiative (ADNI) policy and disclosing ADNI biomarker information to research participants.
The Issue
The Alzheimer’s Disease Neuroimaging Initiative (ADNI) gathers medical data researchers use for clinical research. Currently, ADNI policy states that research results not be returned to ADNI participants. In April 2012, the Food and Drug Administration (FDA) approved the amyloid-binding radiotracer florbetapir. Given this approval, this article examines investigators' opinions on changing the ADNI policy and disclosing ADNI biomarker information to research participants.
While a majority support disclosure of amyloid, ADNI investigators need guidance on how to return results and monitor the disclosure process.