Longitudinal Investigation For the Enhancement of Down Syndrome Research (LIFE-DSR)

Play video to see what participation look like.

Please check the LIFE-DSR Sites Directory to find the participating site's contact information updated as each site activates between June and September of 2019.


The LIFE-DSR study is planning to open for the recruitment of adults with Down syndrome over the age of 25 in late April or May of 2019. The study is expected to complete in 2021. This will be the first study run in the DS-CTN.

The LIFE-DSR study is an observational investigation with the goal to better understand the cognitive and behavioral changes along with the health issues found in adults with Down syndrome as they progress toward Alzheimer’s disease.

Recruiting registration link will be available mid-June 2019.

The study will recruit adults 25 years of age or older and each participant will undergo a baseline evaluation followed by a 1-year then a 2-year follow-up visit. Each participant will undergo a routine health exam including blood collection and will take cognitive and behavioral evaluations at each visit.

This is not a clinical trial where a new drug treatment will be tested. The study protocol has been approved by the Institutional Review Board (IRB). The IRB is an independent group whose main function is to ensure that all people participating scientific research have their safety protected and the research is conducted ethically.