Multi-Institutional Registry for Malignant Peripheral Nerve Sheath Tumors

Status

Recruiting

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT03141021

Enrollment

1050

Registered

2017-05-04

Start date

2017-04-28

Completion date

2053-04-30

Last updated

2026-03-09

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Malignant Peripheral Nerve Sheath Tumors

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.

Interventions

None listed

Study design

Observational model

COHORT

Time perspective

OTHER

Eligibility

Sex/Gender

ALL

Healthy volunteers

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).

Design outcomes

Primary

Measure	Time frame	Description
Histologic characteristics of malignant peripheral nerve sheath tumor (MPNST)	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)	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)	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)	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)	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)	10 years	-The data collected through this registry will be used to analyze previously unanticipated patterns and prognostic clues about MPNST

Countries

Canada, India, Japan, United Kingdom, United States

Contacts

CONTACTAngela Hirbe, M.D., Ph.D.

hirbea@wustl.edu(314) 362-8965

PRINCIPAL_INVESTIGATORAngela Hirbe, M.D., Ph.D.

Washington University School of Medicine

Outcome results