Creating a Secure Electronic Health Record Registry for Adults with Bone and Soft Tissue Tumors to Support Research and Patient Care

What this Trial Is About

Researchers are creating a secure electronic health record EHR-based registry to collect clinical and research data on rare diseases, specifically bone and soft tissue tumors. This observational study aims to help identify clinical and molecular features related to prognosis and therapy response, encourage collaboration between institutions, and standardize biospecimen collection for biomarker analysis in patients treated and monitored at Ohio State University. Participants will not receive experimental treatments but will be observed as part of routine care. They will complete quality of life questionnaires, and their medical records will be reviewed. Blood samples may be collected for up to two years to support biomarker research. The study facilitates long-term data collection and collaboration to better understand these rare tumors. During the study, participants will provide information through questionnaires and allow access to their medical records. Researchers will monitor outcomes such as overall survival over five years. The study includes ongoing collection of clinical data and biospecimens to support research. Participation duration varies, and there is no interventional treatment provided as this is an observational registry.

An Electronic Health Record (EHR)-Based Comprehensive Bone and Soft Tissue Tumor Registry