An observational study in Ovarian Sex-cord Stromal Tumor, Testicular Stromal Tumors and Ovarian Small Cell Carcinoma, sponsored by Children's Hospitals and Clinics of Minnesota. Recruiting at 1 site in United States. Per ClinicalTrials.gov, last updated 2026-10-23.
Sponsored by Children's Hospitals and Clinics of Minnesota · Observational
Rare tumors are understudied, yet have the potential to shed light on vast areas of cancer research. Ovarian sex cord-stromal tumors, rare tumors of childhood and young adulthood, have recently been found to be associated with a lung cancer of early childhood called pleuropulmonary blastoma (PPB). The cause of these ovarian tumors is unknown. DICER1 mutations are seen in the majority of children with PPB. Research shows DICER1 mutations are also seen in some patients with ovarian tumors. Like PPB, ovarian stromal tumors are highly curable when found in early stage; however, later forms of the disease are aggressive and often fatal. The International Ovarian Stromal Tumor Registry collects clinical and biologic data to understand why these tumors occur and how to treat them. Current work involves the study of the role of DICER1 and miRNA expression in ovarian stromal tumors. Understanding the clinical history, predisposing factors and DICER1 and miRNA expression in these ovarian tumors of childhood will lead to targeted screening and risk stratification for evidence-based treatment and biologically rational therapies. These efforts will improve the lives of children by increasing survival and reducing late effects.
The specific goals of the International Ovarian and Testicular Stromal Tumor Registry are:
The Registry collects and analyzes case-by-case data on ovarian and testicular stromal tumors. Cases are identified:
The data collected include:
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.
Children's Hospitals and Clinics of Minnesota is the lead sponsor of 49 studies on the registry; 2 are open to participants now.
Counted across the registry records on this site, refreshed daily.
The criteria were revised on the registry on Oct 23, 2026. See what changed
The International OTST Registry is established in collaboration with Children's Minnesota.
All patients with a suspected gonadal stromal tumor or a similar tumor. International enrollment is encouraged. Patients of any age are eligible, but based on epidemiology and referral patterns, most participants are expected to be under age 20.
DICER1 mutations in ovarian and testicular stromal tumors
We will analyze germline DNA from patients with gonadal stromal tumors to determine the presence of DICER1 mutations. The tumor tissue will also be sequenced. mRNA and miRNA expression will be analyzed on tumor tissue. Results of the above will be correlated with clinical outcome.
Time frame: 3 years
Clinical factors associated with outcome in ovarian and testicular stromal tumors
We will analyze the clinical records to determine which factors influence prognosis
Time frame: 10 years
Pathologic and Genetic Correlations
We will correlate the pathologic and genetic data with clinical data to describe factors associated with poor prognosis.
Time frame: 5 years
Started Dec 2011 (actual). Primary completion is estimated for Dec 2030, 228 months after the start.
Since we started tracking on Sep 25, 2026, the dates moved once, on Oct 23, 2026: primary completion Dec 2028 → Dec 2030 and completion Dec 2030 → Dec 2035.
Earlier changes are on the record history on ClinicalTrials.gov ↗
How these figures are worked out, and which studies are left out of them.
From the registry record's own update history. This site started tracking changes on Sep 25, 2026; for anything earlier, see the record history on ClinicalTrials.gov ↗
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Sex Cord-Gonadal Stromal Tumors
Children's Hospitals and Clinics of Minnesota