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.
Malignant Peripheral Nerve Sheath Tumors
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.
Multi-Institutional Registry for Malignant Peripheral Nerve Sheath Tumors
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Moffitt Cancer Center, Tampa, Florida, United States, 33612
Johns Hopkins, Baltimore, Maryland, United States, 21205
National Institutes of Health (NIH), Bethesda, Maryland, United States, 20892
Dana Farber Cancer Institute, Boston, Massachusetts, United States, 02215
University of Minnesota, Minneapolis, Minnesota, United States, 55455
Washington University School of Medicine, Saint Louis, Missouri, United States, 63110
Memorial Sloan Kettering Cancer Center, New York, New York, United States, 10065
Lifespan, Providence, Rhode Island, United States, 02903
University of Utah, Salt Lake City, Utah, United States, 84112
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ALL
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Washington University School of Medicine,
Angela Hirbe, M.D., Ph.D., PRINCIPAL_INVESTIGATOR, Washington University School of Medicine
2053-04-30