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