Registry for Malignant Peripheral Nerve Sheath Tumors
Official title: Multi-Institutional Registry for Malignant Peripheral Nerve Sheath Tumors
Run by Washington University School of Medicine · NCT03141021 · Data updated 2026-11-12
This study is creating a global registry to collect information about malignant peripheral nerve sheath tumors in people with neurofibromatosis type 1 to help improve understanding and treatment of these tumors.
Quick facts
| Study type | Observational |
|---|---|
| Sex | All |
| Enrollment | 1050 (estimated) |
| Sponsor | Washington University School of Medicine Academic / other |
| Locations | 13 sites (Tampa, Florida and 12 other locations) |
| Status | Recruiting |
| Started | April 28, 2017 |
| Main results expected | April 30, 2053 |
| Study ends | April 30, 2053 |
| Registry record updated | March 9, 2026 |
| Trial ID | NCT03141021 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates for this study are patients diagnosed with malignant peripheral nerve sheath tumors.
✕Probably not a fit
Patients without a diagnosis of MPNST or those who do not consent to participate will not benefit from this study.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This observational study aims to create a worldwide registry to collect and analyze clinical data related to malignant peripheral nerve sheath tumors (MPNST) associated with neurofibromatosis type 1 (NF1). It will utilize a retrospective approach to gather standardized information on histology, treatment, and molecular data from various expert centers globally. The registry will also include biospecimens and genetic data to facilitate comprehensive analyses of these tumors. By identifying patterns and trends in the data, the study seeks to enhance understanding and management of MPNSTs.
Why it matters
Potential benefit: If successful, this registry could lead to improved diagnosis, treatment strategies, and outcomes for patients with MPNST.
How similar studies have gone: Other studies have shown success with similar registry approaches, indicating potential for valuable insights and advancements in treatment.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria and Exclusion Criteria: -Any patient diagnosed with an MPNST is eligible for enrollment to this registry provided s/he consents to participate (or consent form his/her parent or legal guardian or legally authorized representative is obtained).
Where it's running
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Johns Hopkins
Baltimore, Maryland, United States Recruiting -
Washington University School of Medicine
St Louis, Missouri, United States Recruiting -
Mount Sinai
Toronto, Ontario, Canada Recruiting -
Nagoya University Hospital
Nagoya, Showa Ward, Japan Recruiting -
Moffitt Cancer Center
Tampa, Florida, United States Completed -
National Institutes of Health (NIH)
Bethesda, Maryland, United States Not yet recruiting
Show 7 more locations
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Dana Farber Cancer Institute
Boston, Massachusetts, United States Withdrawn -
University of Minnesota
Minneapolis, Minnesota, United States Withdrawn -
Memorial Sloan Kettering Cancer Center
New York, New York, United States Not yet recruiting -
Lifespan
Providence, Rhode Island, United States Completed -
University of Utah
Salt Lake City, Utah, United States Completed -
Global Gene Corporation
Mumbai, India Completed -
Royal National Orthopedic Hospital
London, United Kingdom Terminated
Study contacts
- Principal investigator: Angela Hirbe, M.D., Ph.D. — Washington University School of Medicine
- Study coordinator: Angela Hirbe, M.D., Ph.D.
- Email: hirbea@wustl.edu
- Phone: (314) 362-8965
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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Safety and preliminary activity of BMS-986504 in unresectable MPNST
A new medicine called BMS-986504 is being tested to see if it is safe and may help people with unresectable malignant peripheral nerve sheath tumors, especially those whose tumors lack MTAP.
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How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.