Down Syndrome Clinical Trials Network


Improve the quality of trials conducted under the best care practices.
Empower families to accelerate future enrollment in clinical trials.
Attract more public and industry sponsors to conduct clinical trials for Down syndrome.

The goal for the Down Syndrome Clinical Trials Network (DS-CTN) is to carry out clinical trials more rapidly with the readiness of clinical sites and the availability of ready-to-enroll participants with Down syndrome. This is important, because several promising interventions to improve health and independence for individuals with Down syndrome are ready to enter clinical trials in the next 5 years that will require hundreds of participants in each.

The DS-CTN is launching 11 sites ready and coordinated to conduct large-scale, multi-site trials in 9 states by 2020 with the supervision of experienced clinicians who are experts at providing medical care for individuals with Down syndrome. Our first focus is supporting observational studies and preparing for possible clinical trials aimed at preventing Alzheimer’s onset in adults with Down syndrome – because promising medicines are ready and 55% of them are at higher risk of symptoms by age 50.

In the future, we plan to expand and include readiness for trials involving speech challenges, sleep disturbances, significant behavioral and mental health issues, autism, “DS Disintegrative Disorder,” and auto-immune conditions in pediatrics and adults. Several of the initial DS-CTN clinical sites already see pediatric-aged patients. Download the DS-CTN FAQ for more details or explore the clinics in the network below.

Families that are near the clinics in the network may contact their local clinician to see how they may participate or email ds-ctn@lumindrds.org for more information.

 

DS-CTN Clinics

Advocate Health
Chicago, IL
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Barrow Neurological Institute
Phoenix, AZ
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Case Western Reserve University
Cleveland, OH
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Cincinnati Children’s
Cincinnati, OH
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Duke University
Durham, NC
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Emory University
Atlanta, GA
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Kennedy Krieger Institute/John Hopkins
Baltimore, MD
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Massachusetts General Hospital
Boston, MA
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Rush University
Chicago, IL
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UC Irvine
Irvine, CA
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University of Kentucky
Lexington, KY
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DS-CTN Funding Partners

AC Immune SA
Co-Fund Research
Alana Foundation
Co-Fund Research
H. Lundbeck A/S
Co-Fund Research