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.
Study Type
OBSERVATIONAL
Enrollment
1,050
Moffitt Cancer Center
Tampa, Florida, United States
COMPLETEDJohns Hopkins
Baltimore, Maryland, United States
RECRUITINGNational Institutes of Health (NIH)
Bethesda, Maryland, United States
NOT_YET_RECRUITINGDana Farber Cancer Institute
Boston, Massachusetts, United States
WITHDRAWNUniversity of Minnesota
Minneapolis, Minnesota, United States
WITHDRAWNWashington University School of Medicine
St Louis, Missouri, United States
RECRUITINGMemorial Sloan Kettering Cancer Center
New York, New York, United States
NOT_YET_RECRUITINGLifespan
Providence, Rhode Island, United States
COMPLETEDUniversity of Utah
Salt Lake City, Utah, United States
COMPLETEDMount Sinai
Toronto, Ontario, Canada
RECRUITING...and 3 more locations
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
Time frame: 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
Time frame: 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
Time frame: 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
Time frame: 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
Time frame: 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
Time frame: 10 years
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