Multi-Institutional Registry for Malignant Peripheral Nerve Sheath Tumors
Recruiting now
Conditions studied: Malignant Peripheral Nerve Sheath Tumors
In brief
First, the investigators plan to use a retrospective analysis to determine the clinical landscape of neurofibromatosis (NF)1-associated malignant peripheral nerve sheath tumor (MPNST) and precursor lesions (e.g., atypical or nodular plexiform neurofibromas). A worldwide database will be established, collecting, in a standardized manner, histologic, immunohistochemical, molecular, radiographic, treatment, and related clinical data from centers worldwide with expertise in these NF1-related cancers. Although retrospective in nature, the resulting data from this registry may reveal previously unanticipated patterns, similar to the INFACT effort outcome. This registry would then allow the acquisition of data associated with MPNST biospecimens collected under associated banks (frozen or paraffin-embedded, germline (or normal tissue DNA) samples, and any previously somatic whole-exome or whole-genome sequencing data for aggregate analyses). Second, the investigators plan to co-register patients to institutional banks in order to prospectively collect MPNST samples for analysis. These patients will be consented in order to collect the above information and for banking of tumor tissue and future studies that include genomic characterization of the tumors.
Key facts
- Study ID
- NCT03141021
- Run by
- Washington University School of Medicine
- People needed
- 1050
- Starts
- 2017-04-28
- Expected to finish
- 2053-04-30
- Last updated by the study team
- 2026-03-09
Who can join
Age: any. Sex: any. Healthy volunteers: not accepted.
Where it is running
- Mount Sinai — Toronto, Ontario, Canada (enrolling)
- Washington University School of Medicine — St Louis, Missouri, United States (enrolling)
- Nagoya University Hospital — Nagoya, Showa Ward, Japan (enrolling)
- Johns Hopkins — Baltimore, Maryland, United States (enrolling)
- Memorial Sloan Kettering Cancer Center — New York, New York, United States
- Lifespan — Providence, Rhode Island, United States
- University of Utah — Salt Lake City, Utah, United States
- Global Gene Corporation — Mumbai, India
- Moffitt Cancer Center — Tampa, Florida, United States
- Royal National Orthopedic Hospital — London, United Kingdom
- National Institutes of Health (NIH) — Bethesda, Maryland, United States
- Dana Farber Cancer Institute — Boston, Massachusetts, United States
- University of Minnesota — Minneapolis, Minnesota, United States
Full record on ClinicalTrials.gov
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