Multi-Institutional Registry for Malignant Peripheral Nerve Sheath Tumors
1 other identifier
observational
1,050
5 countries
13
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.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Apr 2017
Longer than P75 for all trials
13 active sites
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
Click on a node to explore related trials.
Study Timeline
Key milestones and dates
First Submitted
Initial submission to the registry
April 13, 2017
CompletedStudy Start
First participant enrolled
April 28, 2017
CompletedFirst Posted
Study publicly available on registry
May 4, 2017
CompletedPrimary Completion
Last participant's last visit for primary outcome
April 30, 2053
ExpectedStudy Completion
Last participant's last visit for all outcomes
April 30, 2053
March 9, 2026
March 1, 2026
36 years
April 13, 2017
March 5, 2026
Conditions
Outcome Measures
Primary Outcomes (6)
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
Eligibility Criteria
The oncology clinic of each participating institution
You may not qualify if:
- 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).
Contact the study team to confirm eligibility.
Sponsors & Collaborators
Study Sites (13)
Moffitt Cancer Center
Tampa, Florida, 33612, United States
Johns Hopkins
Baltimore, Maryland, 21205, United States
National Institutes of Health (NIH)
Bethesda, Maryland, 20892, United States
Dana Farber Cancer Institute
Boston, Massachusetts, 02215, United States
University of Minnesota
Minneapolis, Minnesota, 55455, United States
Washington University School of Medicine
St Louis, Missouri, 63110, United States
Memorial Sloan Kettering Cancer Center
New York, New York, 10065, United States
Lifespan
Providence, Rhode Island, 02903, United States
University of Utah
Salt Lake City, Utah, 84112, United States
Mount Sinai
Toronto, Ontario, M5T 3L9, Canada
Global Gene Corporation
Mumbai, India
Nagoya University Hospital
Nagoya, Showa Ward, Japan
Royal National Orthopedic Hospital
London, United Kingdom
Related Links
Biospecimen
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.
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- PRINCIPAL INVESTIGATOR
Angela Hirbe, M.D., Ph.D.
Washington University School of Medicine
Central Study Contacts
Study Design
- Study Type
- observational
- Observational Model
- COHORT
- Time Perspective
- OTHER
- Target Duration
- 10 Years
- Sponsor Type
- OTHER
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
April 13, 2017
First Posted
May 4, 2017
Study Start
April 28, 2017
Primary Completion (Estimated)
April 30, 2053
Study Completion (Estimated)
April 30, 2053
Last Updated
March 9, 2026
Record last verified: 2026-03
Data Sharing
- IPD Sharing
- Will not share