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.  

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. 

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.