Multi-Institutional Registry for Malignant Peripheral Nerve Sheath Tumors

  • STATUS
    Recruiting
  • End date
    Apr 28, 2027
  • participants needed
    1000
  • sponsor
    Washington University School of Medicine
Updated on 17 December 2020
Investigator
Jack F Shern, M.D.
Primary Contact
National Institutes of Health (NIH) (9.7 mi away) Contact
+9 other location

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.

Details
Clinical Study IdentifierNCT03141021
SponsorWashington University School of Medicine
Last Modified on17 December 2020

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Eligibility

Yes No Not Sure

Inclusion Criteria

Gender: Male or Female
Do you have Nerve Sheath Tumors?
Do you have any of these conditions: Nerve Sheath Tumors or mpnst?
Do you have any of these conditions: Nerve Sheath Tumors or mpnst?
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 is obtained)

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 is obtained)
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