(P 209) SARCOMA PATIENT COMMUNITY DATA COLLABORATION TO ADVANCE RESEARCH

Objective: Research and innovation in sarcoma has historically lagged behind more common malignancies. Among other contributing factors, including disparate funding support, there is lack of cohesive high-quality genetic and genomic data available to researchers that is representative of the heterogenous nature of this group of diseases. To address this unmet need, Sarcoma Foundation of America has launched a sarcoma community data project as a collaboration among patient advocacy organizations and researchers.

Methods: Through this collaboration we will (1) retrospectively combine existing data from patients, patient organizations and care providers and (2) prospectively collect data from patients, patient organizations care providers into a centralized de-identified data repository. Further, this initiative will combine next-generation sequencing and molecular profiling studies with electronic medical records data to allow the community to learn about patient outcomes, natural history of disease, and off-label drug effectiveness. By pooling data from many patients across different institutions, we will improve the ability to achieve statistical power and derive meaningful conclusions from these data. This data source will be available to researchers interested in asking important questions about molecular predictors of metastatic disease, treatment failure and success, effective drug combinations and other correlative metrics.

Results: N/A

Conclusion: Currently, patients, providers, and advocacy organizations collect and deposit data in one of many commercially available or academically affiliated platforms, creating a fractured network of data that cannot be mined collectively to answer a scientific question. The sarcoma patient community data collaboration to advance research represents a patient-driven and outcomes-focused data initiative within the sarcoma advocacy community to facilitate ethical data sharing and research advancement.