Multi-Institutional Registry for Malignant Peripheral Nerve Sheath Tumors



Status:Recruiting
Conditions:Neurology
Therapuetic Areas:Neurology
Healthy:No
Age Range:Any
Updated:11/22/2018
Start Date:April 28, 2017
End Date:April 28, 2027
Contact:Angela Hirbe, M.D., Ph.D.
Email:hirbea@wustl.edu
Phone:(314) 362-8965

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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.


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 is
obtained).
We found this trial at
4
sites
9000 Rockville Pike
Bethesda, Maryland 20892
Principal Investigator: Jack F Shern, M.D.
Phone: 301-402-1444
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1275 York Ave
New York, New York 10021
(212) 639-2000
Principal Investigator: Ping Chi, M.D., Ph.D.
Phone: 646-888-4166
Memorial Sloan Kettering Cancer Center Memorial Sloan Kettering Cancer Center — the world's oldest and...
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New York, NY
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660 S Euclid Ave
Saint Louis, Missouri 63110
(314) 362-5000
Principal Investigator: Angela Hirbe, M.D., Ph.D.
Phone: 314-362-8965
Washington University School of Medicine Washington University Physicians is the clinical practice of the School...
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Saint Louis, MO
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Toronto, Ontario
Principal Investigator: Jay Wunder, M.D.
Phone: 416-586-5995
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Toronto,
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