The International Schwannomatosis Database is maintained with the vision of bringing together patients with schwannomatosis who want to help us learn more about this disease with researchers who are sponsoring trials. We hope that by connecting patients and researchers more effectively, we might better understand schwannomatosis as a disease and design helpful treatments that can begin to be tested.
In order to connect patients and researchers, basic information about people affected with schwannomatosis will be entered into this database for all persons who provide consent to participate. The information entered will NOT be enough for anyone to identify these individuals. For instance, we do not collect name, birth date, address, or any other medical details by which someone would be able to identify a person. Each individual file will be listed by a unique ID number that only the medical team who cares for the patient will know.
If a researcher proposes a trial for which a person might be eligible, they will contact the medical team under which an individual file was entered. The local medical team will then be in touch with the identified individual about the details of study. Each person contacted can decide at that time whether or not they want to participate in that study.
We are recruiting patients with definitive or possible schwannomatosis to participate in this database. People with more than one schwannoma, who do not have neurofibromatosis type 2 (NF2), are eligible to participate.