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| Name | Class |
|---|---|
| Boston Children's Hospital | OTHER |
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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.
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| 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 |
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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 or legally authorized representative is obtained).
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The oncology clinic of each participating institution
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Angela Hirbe, M.D., Ph.D. | Contact | (314) 362-8965 | hirbea@wustl.edu |
| Name | Affiliation | Role |
|---|---|---|
| Angela Hirbe, M.D., Ph.D. | Washington University School of Medicine | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Moffitt Cancer Center | Completed | Tampa | Florida | 33612 | United States | |
| Johns Hopkins |
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| Label | URL |
|---|---|
| Alvin J. Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine | View source |
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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) and prospectively collect MPNST samples for analysis.
| Recruiting |
| Baltimore |
| Maryland |
| 21205 |
| United States |
|
| National Institutes of Health (NIH) | Not yet recruiting | Bethesda | Maryland | 20892 | United States |
|
| Dana Farber Cancer Institute | Withdrawn | Boston | Massachusetts | 02215 | United States |
| University of Minnesota | Withdrawn | Minneapolis | Minnesota | 55455 | United States |
| Washington University School of Medicine | Recruiting | St Louis | Missouri | 63110 | United States |
|
| Memorial Sloan Kettering Cancer Center | Not yet recruiting | New York | New York | 10065 | United States |
|
| Lifespan | Completed | Providence | Rhode Island | 02903 | United States |
| University of Utah | Completed | Salt Lake City | Utah | 84112 | United States |
| Mount Sinai | Recruiting | Toronto | Ontario | M5T 3L9 | Canada |
|
| Global Gene Corporation | Completed | Mumbai | India |
| Nagoya University Hospital | Recruiting | Nagoya | Showa Ward | Japan |
|
| Royal National Orthopedic Hospital | Terminated | London | United Kingdom |
| ID | Term |
|---|---|
| D018319 | Neurofibrosarcoma |
| ID | Term |
|---|---|
| D005354 | Fibrosarcoma |
| D018218 | Neoplasms, Fibrous Tissue |
| D009372 | Neoplasms, Connective Tissue |
| D018204 | Neoplasms, Connective and Soft Tissue |
| D009370 | Neoplasms by Histologic Type |
| D009369 | Neoplasms |
| D012509 | Sarcoma |
| D009455 | Neurofibroma |
| D018317 | Nerve Sheath Neoplasms |
| D009380 | Neoplasms, Nerve Tissue |
| D010524 | Peripheral Nervous System Neoplasms |
| D009423 | Nervous System Neoplasms |
| D009422 | Nervous System Diseases |
| D010523 | Peripheral Nervous System Diseases |
| D009468 | Neuromuscular Diseases |
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