Neurofibromatosis Type 1 Tumor Early Detection Study

Launched by DAVID MILLER · Jul 17, 2024

Keywords

ClinConnect Summary

The Neurofibromatosis Type 1 Tumor Early Detection Study is looking at whether a simple blood test, called a liquid biopsy, can help detect a serious tumor called malignant peripheral nerve sheath tumor (MPNST) in adults with Neurofibromatosis Type 1 (NF1). The study aims to find out if this blood test is better or more cost-effective than the usual methods, which include regular check-ups and imaging scans. Researchers hope that by using the liquid biopsy, they can spot MPNST earlier, leading to better treatment outcomes, especially for people who might have trouble accessing care.

To participate in this study, you must be at least 18 years old and have been diagnosed with NF1, along with a history of plexiform neurofibroma, which is a type of growth associated with NF1. Participants will fill out surveys about their health and provide blood samples at the start of the study and every six months for five years. If you develop an MPNST during the study, you'll be asked to provide additional information and blood samples. This research is currently recruiting participants and is open to people living in the USA who can read and understand English or Spanish.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • 18 years and older (adults only)
• • Neurofibromatosis Type 1 (NF1) diagnosis (2021 Revised Diagnostic Criteria, PMID: 34012067)
• • History of plexiform neurofibroma (PN)
• • Able to read and understand English or Spanish
• • Live in the USA
• Exclusion Criteria:
• • Are children (younger than 18 years old)
• • Do not have NF1
• • Have no evidence of PN
• • Are not able to read and understand English or Spanish