What is LIFE-DSR?

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. 

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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. Depending on which site you are connected to, you may be asked to participate in additional tests, such as a PET scan of your brain, a collection of spinal fluid, or a discussion of how you can set goals to work on skills or overcome challenges that are important to you.
  4. 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. 
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Where is LIFE-DSR?

LIFE-DSR is currently taking place at 14 sites across the country. Ask us about travel support!

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Barrow Neurological Institute

Contact:
Sandy Quintanilla
Principal Investigator:
Anna D. Burke, MD

City: Phoenix
State: AZ

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University of California, Irvine

Contact:
Eric Doran
Principal Investigator:
Ira T. Lott, MD

City: Irvine
State: CA

UC San Diego

University of California,
San Diego Health

Contact:
Bailey Hoffman
Principal Investigator:
Elizabeth A Bevins Murphy, MD, PhD

City: San Diego
State: CA

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Advocate Health and Hospitals

Contact:
Nicholas Armijo
Principal Investigator:
Brian Chicoine, MD

City: Chicago
State: IL

Emory School of Medicine

Emory University

Contact:
Robin Vinson
Principal Investigator:
Amy Talboy, MD

City: Atlanta
State: GA

Rush

Rush University Medical Center & Children’s Hospital

Contact:
Melissa Baer
Principal Investigator:
Cesar Ochoa Lubinoff, MD

City: Chicago
State: IL

Kansas

University of Kansas Medical Center Research Institute

Contact:
Kayla Meyer
Principal Investigator:
Moya Peterson, PhD, APRN, FNP-BC

City: Kansas City
State: KS

Sanders Brown

University of Kentucky Research Foundation

Contact:
Roberta Davis
Principal Investigator:
Frederick A. Schmitt, PhD

City: Lexington
State: KY

MGH

Massachusetts General Hospital, McLean Hospital: Charlestown Navy Yard Campus

Contact:
Courtney Jordan
Principal Investigator:
Diana Rosas, MD

City: Boston
State: MA

MGH

Massachusetts General Hospital: MGH Main Campus

Contact:
Amy Torres
Principal Investigator:
Stephanie Santoro, MD

City: Boston
State: MA

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Hugo W. Moser Research Institute at Kennedy Krieger, Inc.

Contact:
Naomi Franklin
Principal Investigator:
George Capone, MD

City: Baltimore
State: MD

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Duke University

Contact:
Gretchen Nichting
Principal Investigator:
Priya Sunil Kishnani, MBBS

City: Durham
State: NC

Cincinnati Childrens Hospital

Cincinnati Children’s Hospital

Contact:
Kellie (Ramsdale) Voth
Principal Investigator:
Anna J. Esbensen, PhD

City: Cincinnati
State: OH

Western

Case Western Reserve University

Contact:
Melissa Stasko
Principal Investigator:
Alberto Costa, MD, PhD

City: Cleveland
State: OH

If you’re interested in participating in LIFE-DSR, please feel free to reach out and a member of our team will get back to you.

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