Malignant Peripheral Nerve Sheath TumorsNCT03141021
Multi-Institutional Registry for Malignant Peripheral Nerve Sheath Tumors
An observational study of Malignant Peripheral Nerve Sheath Tumors, run by Washington University School of Medicine at 13 sites in 5 countries.
Trial 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). Read more about this study
- Who is it for?
- Any age
- Conditions the study is for
- Malignant Peripheral Nerve Sheath Tumors
- How many people
- 1,050 participants
- Where
- 13 sitesin 5 countries
- Study dates
- 28 Apr 2017to 30 Apr 2053
- How long will I take part?
- 10 Years
- Phase
- Observational
- Are there results?
- Not yet: the study is under way
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages Any age
- All sexes
- No healthy volunteers
- Child, Adult, Older adult
Study population: The oncology clinic of each participating institution
Who may be able to join
- -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).
Who cannot join
None listed.
Trial locations and contacts
13 sites in 5 countries. Contact the study team or a site near you to ask about taking part.
13 sites in 5 countries
United States9 sites, 4 recruiting
- Recruiting
Johns Hopkins
Baltimore, Maryland, 21205
Christine Pratilas, M.D., 410-955-8751
Christine Pratilas, M.D.
- Not yet recruiting
National Institutes of Health (NIH)
Bethesda, Maryland, 20892
Jack F Shern, M.D., 301-402-1444, john.shern@nih.gov
Jack F Shern, M.D.
- Withdrawn
Dana Farber Cancer Institute
Boston, Massachusetts, 02215
- Withdrawn
University of Minnesota
Minneapolis, Minnesota, 55455
- Not yet recruiting
Memorial Sloan Kettering Cancer Center
New York, New York, 10065
Ping Chi, M.D., Ph.D., 646-888-4166
Ping Chi, M.D., Ph.D.
- Completed
Lifespan
Providence, Rhode Island, 02903
- Completed
University of Utah
Salt Lake City, Utah, 84112
- Recruiting
Washington University School of Medicine
St Louis, Missouri, 63110
Angela Hirbe, M.D., Ph.D., (314) 362-8965, hirbea@wustl.edu
Angela Hirbe, M.D., Ph.D.
- Completed
Moffitt Cancer Center
Tampa, Florida, 33612
Canada1 site, 1 recruiting
- Recruiting
Mount Sinai
Toronto, Ontario, M5T 3L9
Jay Wunder, M.D., 416-586-5995, jay.wunder@sinaihealthsystem.ca
Jay Wunder, M.D.
Japan1 site, 1 recruiting
- Recruiting
Nagoya University Hospital
Nagoya, Showa Ward
Yoshihiro Nishida, M.D., Ph.D., +81 52-741-2111, ynishida@med.nagoya-u.ac.jp
Yoshihiro Nishida, M.D., Ph.D.
United Kingdom1 site
- Terminated
Royal National Orthopedic Hospital
London
About this study
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.
- Conditions
- Malignant Peripheral Nerve Sheath Tumors
- Medical subject headings
- Neurofibrosarcoma
What is being measured
The primary outcome is the main question the study is designed to answer.
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
Measured: 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
Measured: 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
Measured: 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
Measured: 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
Measured: 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
Measured: 10 years
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted4 May 2017
- Study start28 Apr 2017
- Primary completion30 Apr 2053 (estimated)
- Study completion30 Apr 2053 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Malignant Peripheral Nerve Sheath TumorsStudies of the same condition, open and under way.
- More trials run by Washington University School of MedicineThe sponsor's other registered studies.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Cohort
- Time perspective
- Other
- Enrolment
- 1,050 participants (estimated)
- Target duration
- 10 Years
Sponsor and investigators
- Lead sponsor
- Washington University School of Medicine
- Sponsor type
- University, hospital or other
- Collaborators
- Boston Children's Hospital
- Responsible party
- Sponsor
- Investigators
- Angela Hirbe, M.D., Ph.D., Principal investigator, Washington University School of Medicine
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT03141021
- Sponsor's protocol ID
- 201702006
- Status last verified
- Mar 2026
- First submitted
- 13 Apr 2017
- Last updated
- 9 Mar 2026
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- No
Study at a glance
From the registry record, last updated by the sponsor on 9 Mar 2026. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Multi-Institutional Registry for Malignant Peripheral Nerve Sheath Tumors
- ClinicalTrials.gov ID
- NCT03141021
- Acronym / sponsor ID
- 201702006
- Conditions
- Malignant Peripheral Nerve Sheath Tumors
- Study type
- Observational
- Recruitment status
- Recruiting
- Enrolment
- 1,050 participants (estimated)
- Lead sponsor
- Washington University School of MedicineUniversity, hospital or other
- Collaborators
- Boston Children's Hospital
- Study start
- 28 Apr 2017 (actual)
- Primary completion
- 30 Apr 2053 (estimated)
- Study completion
- 30 Apr 2053 (estimated)
- First posted
- 4 May 2017 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
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.
Study design
- Observational model
- Cohort
- Time perspective
- Other
- Target follow-up
- 10 Years
Who may qualify
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Child, Adult, Older adult
- Study population
- The oncology clinic of each participating institution
Key inclusion criteria (1 listed)
- -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).
Key exclusion criteria (0 listed)
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
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
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 9 Mar 2026.
- Alvin J. Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of MedicineLink provided by the sponsor.
- Individual participant dataSharing planned: No
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part.
Angela Hirbe, M.D., Ph.D. principal investigator
Washington University School of Medicine
13 sites in 5 countries: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Malignant Peripheral Nerve Sheath Tumors, run by Washington University School of Medicine at 13 sites in 5 countries.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 1 inclusion and 0 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: looking for participants now, as of the sponsor's last update on 9 Mar 2026. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 13 sites in United States, Canada, India, Japan, United Kingdom. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
Contact Angela Hirbe, M.D., Ph.D. ((314) 362-8965, hirbea@wustl.edu), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Histologic characteristics of malignant peripheral nerve sheath tumor (MPNST) (time frame: 10 years). The study lists 6 primary outcomes in all. It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 9 Mar 2026.