Neurofibromatosis Registry Portal for Patients with NF1, NF2, and Schwannomatosis A Long-Term Observational Study by the Childrens Tumor Foundation

What this Trial Is About

This research aims to collect information from patients with Neurofibromatosis types 1 and 2, and Schwannomatosis through a patient registry. The purpose is to gather patient-reported symptoms, treatments, and experiences to provide data for researchers and to connect patients with clinical trial opportunities. The registry may serve as a valuable natural history resource for these conditions. Participants access the NF Registry via a secure web portal where adult patients or parents of children with the conditions can create an account. After consent and activation, they complete detailed online surveys about their medical history, diagnosis, clinical symptoms, treatments, and quality of life. The registry is maintained over time with participants asked to update their information annually. Throughout the study, patient data is securely stored and de-identified for analysis and sharing with researchers. Participants can view aggregated data and choose to receive information about relevant clinical trials. There is no set end date for participation, allowing for long-term tracking of disease progression and outcomes. The main measurement is to develop a natural history understanding of NF1, NF2, and Schwannomatosis by 2050.

Neurofibromatosis (NF) Registry Portal