Clinical trial Recruiting at 4 sites Observational

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 typeObservational
SexAll
Enrollment1050 (estimated)
SponsorWashington University School of Medicine
Academic / other
Locations13 sites (Tampa, Florida and 12 other locations)
StatusRecruiting
StartedApril 28, 2017
Main results expectedApril 30, 2053
Study endsApril 30, 2053
Registry record updatedMarch 9, 2026
Trial IDNCT03141021 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

  • 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
  • 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.

How to take part

  1. Review the eligibility criteria above with your treating physician.
  2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
  3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.
Last reviewed 2026-11-14 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.