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About the Down Syndrome Clinical Trials Network: DS-CTN

We’re advancing Down syndrome research by breaking down barriers and providing a framework for clinical trials that include people with Down syndrome.

The Down Syndrome Clinical Trials Network (DS-CTN) was founded by LuMind IDSC in 2018 to provide a system of associated medical clinics aligned to conduct large-scale, multi-site clinical trials and studies that accelerate understanding of health conditions associated with Down syndrome.  

The goal of the DS-CTN is to carry out clinical trials with the Down syndrome population by engaging clinical teams that treat people with Down syndrome.   

What Does the DS-CTN do?

DS-CTN sites are “clinical trial-ready”  in that they already provide high quality clinical care to individuals with Down syndrome, have significant experience working with the population, and are skilled in the conduct of clinical trials and data collection.  

In addition to conducting trials, DS-CTN Services are available to trial sponsors who need consulting expertise in order to design, evaluate feasibility, and prepare a clinical trial for the Down syndrome population.  

The DS-CTN is a signature program of the LuMind IDSC Foundation. We accelerate Down syndrome research to increase availability of therapeutic, diagnostic, and medical care options and we empower families through education, connections, and support.

Our Focus

Because the DS-CTN is comprised of practitioners who work with vulnerable populations, trials that go through the DS-CTN are expected to incorporate a person-centric culture that prioritizes the participant and their family.    

The initial focus of the DS-CTN is in the diagnosis, treatment, and prevention of Alzheimer’s disease onset in Down syndrome. As the DS-CTN evolves, project focus will extend beyond Down syndrome-related Alzheimer’s disease to include other medical issues common among individuals with Down syndrome. 

Current Activities

At present, the DS-CTN is conducting its founding project: the Longitudinal Investigation for the Enhancement of Down Syndrome Research (LIFE-DSR) study. LIFE-DSR is a longitudinal cohort study of 270 adults with Down syndrome, their medical histories, biomarker, and neuropsychological testing data.  

With funding from the LuMind IDSC Research Consortium, LIFE-DSR recently expanded to include key sub-studies to collect biomarker and brain imaging data, as well as Goal Attainment Scales.  

The LIFE-DSR study is actively recruiting new participants at 14 sites in ten states. Individuals 25 years and older can consider joining the study.

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.

Click here to learn more!