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Develop data and resource infrastructures to support management and collaborative analysis of diverse clinical, imaging, genetic, molecular, and biomarker data and resources from FTD basic science and clinical studies.
2023 3.G Achieved Develop data and resource infrastructures to support management and collaborative analysis of diverse resources from FTD basic science and clinical studies. DN 2019 ADRD Summit: Frontotemporal Lobar Degeneration (FTD), Focus Area 3: Science of Pathogenesis and Toxicity, Milestone 3 Data Sharing and Reproducibility NINDS Human Biomarkers and Data Repository (BioSEND) National Centralized Repository for Alzheimer’s Disease and Related Dementias (NCRAD) ALLFTD Biospecimen Exchange for Neurological Disorders (BioSEND) 2020
- Support one or more platform(s) that allow the research community to visualize and access clinical data, biospecimens, neuropathological and genetic resources.
Summary of Key Accomplishments
The NIH-funded ALLFTD study has now established infrastructure for sharing clinical data, biospecimens, and neuropathological and genetic resources through several in-house or established existing repositories supported by NIA. ALLFTD is also part of the FTD Prevention Initiative (FPI), an international consortium of clinical FTD researchers for supporting clinical trials and data sharing. The FPI has generated tools for visualizing clinical data across multiple cohorts, and this has led to the development of new disease progression models.
The key accomplishments summary is current as of March 2022.