For Patients & Families

What information is collected

We attempt to obtain detailed information to understand more about ovarian and testicular stromal tumors. We understand that not all information will be available for every patient.

When a person decides to enroll in the Registry, the following information is collected:

  1. records on clinical and laboratory findings
  2. detailed family history
  3. imaging studies including digital images
  4. surgery
  5. pathology records, including review of diagnostic and metastatic disease and of diagnostic material of diseases associated with gonadal stromal tumors (such as hyperplastic thyroid disease)
  6. treatment information(surgery, chemotherapy, radiation)
  7. recurrences or metastases
  8. long-term follow-up records

As a part of routine Registry procedures, original diagnostic slides are obtained for central review. This ensures that the diagnosis is correctly documented by the Registry. 

For patients who consent to the biology portion of the Registry, a small blood sample is collected. Depending on the diganosis, the blood may be analyzed for DICER1 mutation and/or saved for future research to understand more about the causes and prognosis of ovarian and testicular tumors. Participation in the biology portion of the Registry is optional.