Global Patient Registry for Malignant Peripheral Nerve Sheath Tumors Collecting Clinical and Molecular Data

What this Trial Is About

Researchers are collecting and analyzing information about malignant peripheral nerve sheath tumors MPNST associated with neurofibromatosis type 1 NF1 through a global registry. This observational study aims to better understand the clinical patterns, tumor characteristics, and treatment approaches for MPNST and related precursor lesions by gathering data from expert centers worldwide. The research is led by Washington University School of Medicine and focuses on establishing a comprehensive database with standardized clinical and molecular information. The study involves creating a worldwide database that includes retrospective data such as histologic, immunohistochemical, molecular, radiographic, and treatment details related to MPNST. Additionally, patients will be prospectively consented for the collection of tumor samples and genetic material to support further genomic studies. This combination of retrospective analysis and prospective sample banking allows for extensive future research on tumor biology and treatment outcomes. Participants will contribute clinical information and tumor samples to the registry, which will be collected and stored for ongoing and future analyses. The investigators will evaluate multiple aspects of MPNST, including tissue characteristics and genomic profiles, over a 10-year period. The study does not involve direct treatment but focuses on data and sample collection to enhance understanding of MPNST. Participation involves consenting to data sharing and tissue banking, with no specified age or gender restrictions, and the study will continue until at least April 2053.

Multi-Institutional Registry for Malignant Peripheral Nerve Sheath Tumors