Sharing of Progressive Supranuclear Palsy (PSP) data with the Rare Disease Cures Accelerator- Data and Analytics Platform for Analysis of Outcome Measures and Other Purposes

Progressive Supranuclear Palsy (PSP) is a rare disease where the first clinical trials have been completed, but no therapies have been approved The Rare Disease Cures Accelerator - Data and Analytics Platform (RDCA-DAP) is a data sharing and analytics platform set up with the goal of integrating rare disease datasets into larger sets of data for the purpose of developing tools to accelerate drug development across rare diseases. Integration of these PSP datasets with others from the community (currently accessing data from Biogen and academic sites) will increase the size of dataset that can be used for analysis. RDCA-DAP hopes to integrate these datasets, standardize them using CDISC standards to format the data for regulatory submissions and to provide access to the data through its analytics platform (degree of access to be determined with the data custodian). The data will then be available to C-Path quantitative medicine specialists for analysis and development of models of outcome assessments to help improve future clinical trial design (and other potential solutions).