LIFE-DSR
The Down Syndrome Clinical Trials Network (DS-CTN) Study of Alzheimer’s Disease in Down Syndrome, Longitudinal Investigation for the Enhancement of Down Syndrome Research (LIFE-DSR) was a study supported by the LuMind IDSC Research Consortium, now part of the National Down Syndrome Society (NDSS), and with additional support from philanthropy, Alana Foundation, Merck, Eli Lilly, AbbVie and Alkermes. This multi-year observational study tracks the medical, physiological, and neuropsychological changes in adults with Down syndrome to enhance understanding of aging and Alzheimer's disease in this population. By collecting extensive data, including biomarkers across 14 sites in ten states, LIFE-DSR aims to develop tools for measuring Alzheimer’s disease progression and other common medical issues in individuals with Down syndrome
Study Participants
The LIFE-DSR study recruited 256 adults with Down syndrome, aged 25 years and older, across 14 sites in ten states.
Available Data
The comprehensive database for the LIFE-DSR studies includes item-level data from medical histories, biomarker and neuropsychological assessments, and neuroimaging studies, as well as Goal Attainment Scales. Researchers may request access to these datasets through NDSS. Please contact NDSS via email (samples@ndss.org) to get started.
Available Biospecimens
Genomic DNA, Plasma, RNA, PBMC, CSF, and CSF-Pellet are available from NCRAD.