Multi-Institutional Registry for Malignant Peripheral Nerve Sheath Tumors
Key facts
- Where
- Baltimore, Bethesda, Boston, Minneapolis, New York, Providence, Salt Lake City, St Louis, and Tampa, United StatesSee the 9 sites
Where in United States
- Johns HopkinsBaltimore, United StatesTaking people
- National Institutes of Health (NIH)Bethesda, United StatesNot yet recruiting
- Dana-Farber Cancer InstituteBoston, United StatesNo longer taking part
- University of MinnesotaMinneapolis, United StatesNo longer taking part
- Memorial Sloan-Kettering Cancer CenterNew York, United StatesNot yet recruiting
- LifespanProvidence, United StatesNo longer taking part
- University of UtahSalt Lake City, United StatesNo longer taking part
- Washington University School of MedicineSt Louis, United StatesTaking people
- Moffitt Cancer CenterTampa, United StatesNo longer taking part
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- Washington University School of Medicine
- Trial code
- NCT03141021
- Record updated
- 9 March 2026
- Original description
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.Read full original descriptionShow less
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.
Inclusion: -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).