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“You should do a LIFE-DSR study. I had a great experience!”

-John Cronin

You can make a difference for the Down syndrome community like John did. Read on to find out more about the LIFE-DSR Down syndrome research study and how you can get in touch with us about participation!

What is the LIFE-DSR study?

The Longitudinal Investigation for the Enhancement of Down Syndrome Research (LIFE-DSR) is a multi-year, coordinated research study by medical and academic professionals to track and analyze the medical and physical data of 270 adults with Down syndrome.

LIFE-DSR is an “observational” study. This is not a trial for new medication or therapy. Rather, teams in hospitals and universities 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 DS.

Scientists want to learn more about how adults with Down syndrome (DS) change as they age. They particularly want to develop tools to measure the changes that are associated with Alzheimer’s disease for people with Down syndrome. Scientists and clinicians experienced in research are conducting the study, along with participating doctors, and the LuMind IDSC Foundation.

LIFE-DSR Down syndrome research study

What is it like to participate in the LIFE-DSR study?

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.

To learn more, read our Community Spotlight article here!

Ready to get more information? Reach out & start a conversation!

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781.825.1300

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What do participants have to do for LIFE-DSR?

1. Three or more visits to your clinic site over two years. At the site, you will meet with your team and the study doctor. You will have a physical exam, including a blood draw.

2. You will be asked to have a conversation called a “cognitive assessment,” and it will help the researchers measure things that can’t be measured with a scale or a tape measure, like memory, language, and the ability to recognize objects.

3. You and your study partner will learn about measurements and tests available at the site you are connected to. You will have the opportunity to ask questions before you agree to participate. You and your study partner will “give consent” before you join the study.

Become Part of the Longitudinal Investigation for the Enhancement of Down Syndrome Research!

Individuals 25 years and older can consider joining the study.

Fill out the form at the bottom of this page and we’ll be in touch!

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