Observational Study of Liquid Biopsy for Early Detection of Malignant Peripheral Nerve Sheath Tumor in Adults With Neurofibromatosis Type 1

What this Trial Is About

This research investigates whether a liquid biopsy, a blood test, can be an effective tool to monitor the development of malignant peripheral nerve sheath tumor (MPNST) in adults with Neurofibromatosis Type 1 (NF1). It compares this method to the current standard of care, which includes clinical surveillance and imaging, aiming to determine if liquid biopsy can detect MPNST earlier, more cost-effectively, and improve access to care for underserved populations. Participants will provide blood samples at the start of the study and every six months for five years. At baseline, they will give 15 mL of blood, and during follow-up visits, 10 mL. They will also complete surveys about their health and any symptoms related to MPNST. If a participant is diagnosed with MPNST during the study, additional surveys and blood samples will be collected, and tumor tissue samples may be requested from their healthcare provider. Throughout the study, participants will complete regular surveys and blood collections to report symptoms and any new MPNST diagnosis. The main measure is the timing of MPNST detection via liquid biopsy over five years. Researchers will also track the number of participants who develop new MPNSTs. This observational study involves no treatment and will continue for five years after enrollment.

Neurofibromatosis Type 1 Tumor Early Detection Study