Down Syndrome Clinical Trials Network (DS-CTN)

Overview  Why It Matters  |  What LuMind IDSC Is Doing  |  How You Can Help

 Hampus Hillerstrom, Chief Executive Officer - LuMind IDSC Foundation
Hampus Hillerstrom
Chief Executive Officer
LuMind IDSC Foundation

“Foundation-led clinical trials networks have been very successful for Cystic Fibrosis, Lupus and other conditions to rapidly accelerate the pace of providing new treatment options and attract more investment. With DS-CTN, we hope to achieve the same results for children and adults with Down syndrome.”


 

Overview

The goals for the Down Syndrome Clinical Trials Network (DS-CTN) are to:

Dr. Skotko examines girl with Down syndrome
Advance effective treatments for people with Down syndrome

Attract more public and industry sponsors to conduct clinical trials for Down syndrome
Significantly and tangibly improve the care of people with Down syndrome

The DS-CTN network launched in November 2018 with 11 sites to conduct large-scale, multi-site trials in 9 states with the supervision of experienced clinicians who are experts at providing medical care for individuals with Down syndrome.

The DS-CTN network will conduct trials in both adults and children with Down syndrome for a variety of conditions including Alzheimer’s, speech challenges, sleep disturbances, significant behavioral and mental health issues, autism, auto-immune conditions, and more.

The first study – LIFE-DSR – focuses on a natural history observational study in adults with Down syndrome to prepare for possible clinical trials aimed at preventing Alzheimer’s onset in adults with Down syndrome.

Visit the DS-CTN website to learn more.


Why it Matters

To get any treatments for people with Down syndrome approved by the FDA, we need billions of dollars to fund clinical trials and many people with Down syndrome willing to volunteer. Until we launched DS-CTN in 2018, there was no other organized network to conduct multi-site clinical trials for DS. This limited the interest from industry sponsors to fund clinical trials for Down syndrome and families were disappointed with their experience in the few trials that were conducted.

DS-CTN is committed to conducting clinical trials safely and rapidly with many clinical sites throughout the US that have participants with Down syndrome ready and willing to enroll. This is important because several promising interventions are ready to enter clinical trials to treat or prevent Alzheimer’s, to target sleep, cognition, speech, auto-immune conditions and more in individuals with Down syndrome. The testing of experimental treatments will require hundreds of participants from many trained clinical sites.


What LuMind IDSC is Doing

LuMind IDSC

  • Funds, supervises, and develops the DS-CTN clinical trials network that was initially launched with 11 sites;
  • Funds the first DS-CTN study, LIFE-DSR, a natural history study in adults with DS;
  • Leads discussions with industry companies and academic investigators about potential studies to conduct in DS-CTN for the unmet medical needs of people with DS;
  • Reaches out to the adult population with DS and build resources for their specific needs;
  • Expands the outreach and impact of the network including the addition of new sites.

How Can You Help

 


INDIVIDUALS

GET INFORMED: Keep up with active clinical trials: DS-CTN.org, DS-CTN.org/LIFE-DSR, LuMindIDSC.org/clinical-trial-finder, and www.clinicaltrials.gov

VOLUNTEER: If a DS-CTN site is near you and you want to participate in a clinical study, talk with your physician or email us at ds-ctn@lumindidsc.org for more information.

SHARE: Share this information with those you know may benefit.

DONATE: Every dollar donated grows the funds

LOCAL DS ORGANIZATIONS

CONNECT families to clinical trials near you by sharing LuMindIDSC.org/clinical-trial-finder and other LuMind IDSC resources

COLLABORATE with a DS-CTN site near you on family outreach

SHARE research and clinical trials newsletters to educate families

DONATE: Every dollar donated grows the funds needed to fund support for more clinical trials and resources for sleep apnea in children and adults with DS.

 

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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