An observational study in Malignant Peripheral Nerve Sheath Tumors, sponsored by Washington University School of Medicine. Recruiting at 13 sites in 5 countries. Per ClinicalTrials.gov, last updated 2026-03-09.
Sponsored by Washington University School of Medicine · Observational
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.
98 studies on the registry are indexed under Neurofibrosarcoma; 23 are open to participants now.
This study's planned enrollment of 1,050 is above the median of 153 across 10 observational studies indexed under Neurofibrosarcoma.
Browse Neurofibrosarcoma studies →Washington University School of Medicine is the lead sponsor of 1,803 studies on the registry; 271 are open to participants now.
Of its 329 completed or terminated interventional studies of FDA-regulated products, 216 (66%) have results posted.
Counted across the registry records on this site, refreshed daily.
The oncology clinic of each participating institution
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).
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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Plan to share: No
Started Apr 2017 (actual). Primary completion is estimated for Apr 2053, 432 months after the start.
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