--- title: Multi-Institutional Registry for Malignant Peripheral Nerve Sheath Tumors nct_id: NCT03141021 overall_status: RECRUITING sponsor: Washington University School of Medicine study_type: OBSERVATIONAL primary_condition: Malignant Peripheral Nerve Sheath Tumors countries: United States, Canada, India, Japan, United Kingdom canonical_url: "https://parkinsonspathways.com/agent/trials/NCT03141021.md" clinicaltrials_gov: "https://clinicaltrials.gov/study/NCT03141021" ct_last_update_post_date: 2026-03-09 last_seen_at: "2026-05-12T06:39:26.684Z" source: ClinicalTrials.gov (mirrored, no enrichment) --- # Multi-Institutional Registry for Malignant Peripheral Nerve Sheath Tumors **NCT ID:** [NCT03141021](https://clinicaltrials.gov/study/NCT03141021) ## Key Facts - **Status:** RECRUITING - **Study Type:** OBSERVATIONAL - **Target Enrollment:** 1050 - **Lead Sponsor:** Washington University School of Medicine - **Collaborators:** Boston Children's Hospital - **Conditions:** Malignant Peripheral Nerve Sheath Tumors - **Start Date:** 2017-04-28 - **Completion Date:** 2053-04-30 - **CT.gov Last Update:** 2026-03-09 ## Brief Summary 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. ## Eligibility - **Sex:** ALL - **Healthy Volunteers:** No ``` 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). ``` ## Primary Outcomes - **Histologic characteristics of malignant peripheral nerve sheath tumor (MPNST)** _(time frame: 10 years)_ — -The data collected through this registry will be used to analyze previously unanticipated patterns and prognostic clues about MPNST - **Immunohistochemical characteristics of malignant peripheral nerve sheath tumor (MPNST)** _(time frame: 10 years)_ — -The data collected through this registry will be used to analyze previously unanticipated patterns and prognostic clues about MPNST - **Molecular characteristics of malignant peripheral nerve sheath tumor (MPNST)** _(time frame: 10 years)_ — -The data collected through this registry will be used to analyze previously unanticipated patterns and prognostic clues about MPNST - **Radiographic characteristics of malignant peripheral nerve sheath tumor (MPNST)** _(time frame: 10 years)_ — -The data collected through this registry will be used to analyze previously unanticipated patterns and prognostic clues about MPNST - **Treatment given to patients with malignant peripheral nerve sheath tumor (MPNST)** _(time frame: 10 years)_ — -The data collected through this registry will be used to analyze previously unanticipated patterns and prognostic clues about MPNST - **Future genomic characterization of malignant peripheral nerve sheath tumor (MPNST)** _(time frame: 10 years)_ — -The data collected through this registry will be used to analyze previously unanticipated patterns and prognostic clues about MPNST ## Locations (13) - Moffitt Cancer Center, Tampa, Florida, United States — _COMPLETED_ - Johns Hopkins, Baltimore, Maryland, United States — _RECRUITING_ - National Institutes of Health (NIH), Bethesda, Maryland, United States — _NOT_YET_RECRUITING_ - Dana Farber Cancer Institute, Boston, Massachusetts, United States — _WITHDRAWN_ - University of Minnesota, Minneapolis, Minnesota, United States — _WITHDRAWN_ - Washington University School of Medicine, St Louis, Missouri, United States — _RECRUITING_ - Memorial Sloan Kettering Cancer Center, New York, New York, United States — _NOT_YET_RECRUITING_ - Lifespan, Providence, Rhode Island, United States — _COMPLETED_ - University of Utah, Salt Lake City, Utah, United States — _COMPLETED_ - Mount Sinai, Toronto, Ontario, Canada — _RECRUITING_ - Global Gene Corporation, Mumbai, India — _COMPLETED_ - Nagoya University Hospital, Nagoya, Showa Ward, Japan — _RECRUITING_ - Royal National Orthopedic Hospital, London, United Kingdom — _TERMINATED_ ## Recent Field Changes (last 30 days) - `status.overallStatus` — added _(2026-05-12)_ - `status.primaryCompletionDate` — added _(2026-05-12)_ - `status.completionDate` — added _(2026-05-12)_ - `status.lastUpdatePostDate` — added _(2026-05-12)_ - `design.enrollmentCount` — added _(2026-05-12)_ - `eligibility.criteria` — added _(2026-05-12)_ - `eligibility.sex` — added _(2026-05-12)_ - `outcomes.primary` — added _(2026-05-12)_ - `sponsor.lead` — added _(2026-05-12)_ - `sponsor.collaborators` — added _(2026-05-12)_ - `results.hasResults` — added _(2026-05-12)_ - `locations.moffitt cancer center|tampa|florida|united states` — added _(2026-05-12)_ - `locations.johns hopkins|baltimore|maryland|united states` — added _(2026-05-12)_ - `locations.national institutes of health (nih)|bethesda|maryland|united states` — added _(2026-05-12)_ - `locations.dana farber cancer institute|boston|massachusetts|united states` — added _(2026-05-12)_ - `locations.university of minnesota|minneapolis|minnesota|united states` — added _(2026-05-12)_ - `locations.washington university school of medicine|st louis|missouri|united states` — added _(2026-05-12)_ - `locations.memorial sloan kettering cancer center|new york|new york|united states` — added _(2026-05-12)_ - `locations.lifespan|providence|rhode island|united states` — added _(2026-05-12)_ - `locations.university of utah|salt lake city|utah|united states` — added _(2026-05-12)_ - `locations.mount sinai|toronto|ontario|canada` — added _(2026-05-12)_ - `locations.global gene corporation|mumbai||india` — added _(2026-05-12)_ - `locations.nagoya university hospital|nagoya|showa ward|japan` — added _(2026-05-12)_ - `locations.royal national orthopedic hospital|london||united kingdom` — added _(2026-05-12)_ --- *Canonical: https://parkinsonspathways.com/agent/trials/NCT03141021.md* *Source data (authoritative): https://clinicaltrials.gov/study/NCT03141021* *This page is a raw mirror with no AI summary, no editorial enrichment, and no Parkinson's-specific filtering.*