This is an observational study creating a registry for people with Neurofibromatosis 1 (NF1), Neurofibromatosis 2 (NF2), and Schwannomatosis. The registry collects information directly from patients about their symptoms, treatments, and experiences with these conditions. The goal is to build a comprehensive database that helps researchers understand how these diseases progress over time (their "natural history") and to connect eligible patients with opportunities to participate in clinical trials. You can join if you have been diagnosed with NF1, NF2, or Schwannomatosis. The study aims to gather information until 2050 to create a detailed picture of these conditions.

Study design

This is an observational study aiming to enroll 20,000 participants. It is a registry where you provide information about your condition.

What's involved

You will create an online account, complete an informed consent form, and then fill out an online survey about your medical and family history, symptoms, treatments, and quality of life.

Compensation

Not stated in the trial record.

Follow-up

The registry aims to collect data until a final report is issued in 2050.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.