Registry for Malignant Peripheral Nerve Sheath Tumors
Multi-Institutional Registry for Malignant Peripheral Nerve Sheath Tumors
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 |
|---|---|
| Enrollment | 1050 (estimated) |
| Sex | All |
| Sponsor | Washington University School of Medicine Academic / other |
| Locations | 13 sites (Tampa, Florida and 12 other locations) |
| Trial ID | NCT03141021 on ClinicalTrials.gov |
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.
Who should consider this trial
Good fit: Ideal candidates for this study are patients diagnosed with malignant peripheral nerve sheath tumors.
Not a fit: Patients without a diagnosis of MPNST or those who do not consent to participate will not benefit from this study.
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 performed: Other studies have shown success with similar registry approaches, indicating potential for valuable insights and advancements in treatment.
Eligibility criteria
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 this trial is running
Tampa, Florida and 12 other locations
- Moffitt Cancer Center — Tampa, Florida, United States (Completed)
- Johns Hopkins — Baltimore, Maryland, United States (Recruiting)
- National Institutes of Health (NIH) — Bethesda, Maryland, United States (Not_yet_recruiting)
- Dana Farber Cancer Institute — Boston, Massachusetts, United States (Withdrawn)
- University of Minnesota — Minneapolis, Minnesota, United States (Withdrawn)
- Washington University School of Medicine — St Louis, Missouri, United States (Recruiting)
- 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)
- Mount Sinai — Toronto, Ontario, Canada (Recruiting)
- Global Gene Corporation — Mumbai, India (Completed)
- Nagoya University Hospital — Nagoya, Showa Ward, Japan (Recruiting)
- 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
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.