Do we get any results back from participating?

The ADNI4 study includes three phases: (1) online tasks, (2) blood draw at a local Quest Diagnostics, and (3) in-clinic testing an at ADNI site. Not all participants who have completed phase 1 (online tasks) will be invited to the other phases.

We do not share data from online or blood tests with participants. Your online memory tests are not shared with you because they are not meant to diagnose conditions or help you make medical choices. Blood samples are analyzed for biomarkers (chemicals/proteins). Your blood sample analysis results are not shared with you because the link between these markers and brain health is still being studied.

If you are invited and decide to join the in-clinic study at an ADNI site, you will have the choice to learn about some of your results. ADNI in-clinic participants complete an amyloid PET scan. Amyloid plaques in the brain increase the risk of developing problems with memory or dementia due to Alzheimer’s disease. However, not everyone with amyloid plaques goes on to develop dementia or other problems with memory or thinking. In-clinic participants can ask the clinician to go over the results of their amyloid PET scan after the scan is completed. Specifically, participants can learn if their brain amyloid level is “elevated” or “not elevated.” The site staff will explain what this means and be able to answer any questions you may have about the scan results.

ADNI researchers will not share information with your doctor, but you are welcome to do so. Study data is anonymized (meaning your results are not linked to your personal information) before sharing with the broader research community.