Clinical Trial: Multi-Institutional Registry for Malignant Peripheral Nerve Sheath Tumors

Study Status: Recruiting
Recruit Status: Recruiting
Study Type: Observational [Patient Registry]

Official Title: Multi-Institutional Registry for 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.

Detailed Summary:
Sponsor: Washington University School of Medicine

Current 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

    Original Primary Outcome: Same as current

    Current Secondary Outcome:

    Original Secondary Outcome:

    Information By: Washington University School of Medicine

    Dates:
    Date Received: April 13, 2017
    Date Started: April 28, 2017
    Date Completion: April 28, 2027
    Last Updated: May 3, 2017
    Last Verified: May 2017