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LIFE-DSR

The Longitudinal Investigation for the Enhancement of Down Syndrome Research (LIFE-DSR) is a foundational project of the Down Syndrome Clinical Trials Network (DS-CTN), supported by the LuMind IDSC Research Consortium. 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 LuMind IDSC. Please contact LuMind via email (LuMindIDSC@LuMindIDSC.org) or phone (781-825-1300) to get started.

Available Biospecimens

Genomic DNA, Plasma, RNA, PBMC, CSF, and CSF-Pellet are available from NCRAD.