Who will receive the results of my blood test? Is my information safe?

​Researchers will use your blood samples and information as part of the ADNI Blood Biomarker study. This includes ADNI study teams based at the University of Pennsylvania and Indiana University, as well as researchers at C2N Diagnostics (a company developing new ways to diagnose Alzheimer’s and other brain disorders). 

If you join the Blood Biomarker study, you will provide Quest with your name, date of birth, gender, and contact information in order to schedule your blood draw appointment. However, your name and personal information will not be connected to your blood samples collected at Quest.

Your sample will be identified only by an ID number. No information that can identify you will be included with the sample. Your blood sample will be stored for future research at the University of Pennsylvania and Indiana University. Your samples will be coded to protect your privacy. Information that can identify you will never be shared with other researchers. Your samples will be stored as long as researchers need them. More research may be done on your coded samples at a future date. 

Researchers may use your blood sample to look at all of your DNA (this is called “whole genome sequencing”). DNA contains information that determines things like eye color or disease risk, and DNA is passed on from parent to child. Genetic information may be shared broadly in a coded form for future genetic research or analysis. We may give certain information about you to other scientists or companies, but we will not give them your name, contact information, or other identifiable information. Research results from these studies will not be shared with you.