Multi-Institutional Registry for Malignant Peripheral Nerve Sheath Tumors
- Conditions
- Malignant Peripheral Nerve Sheath Tumors
- Registration Number
- NCT03141021
- Lead Sponsor
- Washington University School of Medicine
- Brief Summary
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.
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- RECRUITING
- Sex
- All
- Target Recruitment
- 1050
Not provided
-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 is obtained).
Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method Radiographic characteristics of malignant peripheral nerve sheath tumor (MPNST) 10 years -The data collected through this registry will be used to analyze previously unanticipated patterns and prognostic clues about MPNST
Future genomic characterization of malignant peripheral nerve sheath tumor (MPNST) 10 years -The data collected through this registry will be used to analyze previously unanticipated patterns and prognostic clues about MPNST
Histologic characteristics of malignant peripheral nerve sheath tumor (MPNST) 10 years -The data collected through this registry will be used to analyze previously unanticipated patterns and prognostic clues about MPNST
Molecular characteristics of malignant peripheral nerve sheath tumor (MPNST) 10 years -The data collected through this registry will be used to analyze previously unanticipated patterns and prognostic clues about MPNST
Immunohistochemical characteristics of malignant peripheral nerve sheath tumor (MPNST) 10 years -The data collected through this registry will be used to analyze previously unanticipated patterns and prognostic clues about MPNST
Treatment given to patients with malignant peripheral nerve sheath tumor (MPNST) 10 years -The data collected through this registry will be used to analyze previously unanticipated patterns and prognostic clues about MPNST
- Secondary Outcome Measures
Name Time Method
Trial Locations
- Locations (12)
Global Gene Corporation
🇮🇳Mumbai, India
Royal National Orthopedic Hospital
🇬🇧London, United Kingdom
Moffitt Cancer Center
🇺🇸Tampa, Florida, United States
Johns Hopkins
🇺🇸Baltimore, Maryland, United States
National Institutes of Health (NIH)
🇺🇸Bethesda, Maryland, United States
Dana Farber Cancer Institute
🇺🇸Boston, Massachusetts, United States
University of Minnesota
🇺🇸Minneapolis, Minnesota, United States
Washington University School of Medicine
🇺🇸Saint Louis, Missouri, United States
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
Mount Sinai
🇨🇦Toronto, Ontario, Canada