Multi-Institutional Registry for Malignant Peripheral Nerve Sheath Tumors

Study Overview
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Brief Summary
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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.

Official Title
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Multi-Institutional Registry for Malignant Peripheral Nerve Sheath Tumors

Conditions
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Malignant Peripheral Nerve Sheath Tumors

Participation Criteria
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Eligibility Criteria
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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 is obtained).
Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Histologic characteristics of malignant peripheral nerve sheath tumor (MPNST) | -The data collected through this registry will be used to analyze previously unanticipated patterns and prognostic clues about MPNST | 10 years | 
| Immunohistochemical characteristics of malignant peripheral nerve sheath tumor (MPNST) | -The data collected through this registry will be used to analyze previously unanticipated patterns and prognostic clues about MPNST | 10 years | 
| Molecular characteristics of malignant peripheral nerve sheath tumor (MPNST) | -The data collected through this registry will be used to analyze previously unanticipated patterns and prognostic clues about MPNST | 10 years | 
| Radiographic characteristics of malignant peripheral nerve sheath tumor (MPNST) | -The data collected through this registry will be used to analyze previously unanticipated patterns and prognostic clues about MPNST | 10 years | 
| Treatment given to patients with malignant peripheral nerve sheath tumor (MPNST) | -The data collected through this registry will be used to analyze previously unanticipated patterns and prognostic clues about MPNST | 10 years | 
| Future genomic characterization of malignant peripheral nerve sheath tumor (MPNST) | -The data collected through this registry will be used to analyze previously unanticipated patterns and prognostic clues about MPNST | 10 years |