International Ovarian & Testicular Stromal Tumor Registry

The Registry collects and analyzes case-by-case data on ovarian and testicular stromal tumors. Cases are identified: 1. by referrals from clinicians or pathologists 2. by families initiating contact with the Registry 3. by Registry requests to authors of published cases to share further details The data collected include: 1. clinical and laboratory findings 2. family history 3. imaging studies 4. surgery records 5. pathology records including review and study of pathology materials 6. treatment (surgery, chemotherapy, radiation) 7. recurrences or metastases 8. long-term follow-up The demographic and clinical data are abstracted into a database secured by password protection. Each record in the database has a unique Registry number. Enrollment in the OTST Registry is based on local diagnosis, but central pathology review is offered as a part of Registry procedures. For each patient enrolled, the Registry will request 1) whole blood for DNA extraction and lymphoblastoid cell line generation 2) slides or snap frozen tumor tissue (if available), 3) paraffin blocks and/or scrolls and 4) fresh tissue. In some cases, saliva samples, buccal swabs or urine samples will be obtained for DNA extraction. Pathology materials are centrally reviewed when available. Any discrepancies in the diagnostic interpretation are discussed with the submitting pathologist or clinician. When the central review pathologist cannot confirm diagnosis of a stromal tumor, the referring physician is notified. The local pathologist retains responsibility for the final pathological diagnosis. It is the responsibility of the referring physician to notify the patient regarding any discrepancy found. Biologic specimens will be banked and stored for future research.