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NCT Number: NCT03141021

Multi-Institutional Registry for Malignant Peripheral Nerve Sheath Tumors

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.

Recruiting

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Key information

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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).

Treatment and study plan

Primary outcomes

  1. 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

  2. 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

  3. 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

  4. 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

  5. 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

  6. 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

Study contacts

Contact information is provided by the study sponsor or research team.

Angela Hirbe, M.D., Ph.D.

CONTACT

[email protected]

(314) 362-8965

Sponsors and collaborators

Lead sponsor

Washington University School of Medicine

Other

Collaborators

  • Boston Children's Hospital

Registry information

Important dates

Study start
2017
Primary completion
2053
Study completion
2053
First posted
May 4, 2017
Registry last updated
Mar 9, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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