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What is it like to participate in Down syndrome research?

In July 2022, John Cronin and his parents invited LuMind IDSC to follow their family experience as they participated in their LIFE-DSR study visit. This one-of-a-kind peek into research was recorded so that other families might learn about the study and feel encouraged to participate.

LIFE-DSR is an “observational” research study, which means no interventions or drugs are being tested. Rather, researchers in this study collect “data points” (for example, height and weight, sleeping patterns, and blood samples) gathered over time to help researchers form a clearer picture of the physiology of people with Down syndrome.

This data will help scientists learn more about how adults with Down syndrome change as they age. It will also help them develop tools to measure the changes associated with Alzheimer’s disease for people with Down syndrome.

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John and his dad, Mark, wrote about their experience in an article in The Mighty, and a blogpost on their John’s Crazy Socks web site.

“When we talk about Alzheimer’s disease, it is deeply personal,” Mark wrote. “John and others with Down syndrome are not statistics, they are our sons and daughters, brothers and sisters, friends, relatives, and co-workers.”

Check out our LIFE-DSR page for more information on the study and how you can get involved.