What is Schwannomatosis?
Schwannomatosis causes multiple tumors, called schwannomas, to grow on the nerves in the body. Schwannomas can grow along the nerves of the head and spine, as well as along the nerves that run throughout the body. People with schwannomatosis do not develop tumors on the acoustic nerves in the brain, which is an important distinction between schwannomatosis and neurofibromatosis type 2. People with schwannomatosis also do not develop any other kinds of tumors which can be associated with neurofibromatosis, including neurofibromas, meningiomas, ependymomas, or astrocytomas. Schwannomatosis is a genetic condition, but the complete genetic mechanism of this condition is not well understood at this time.
What is the International Schwannomatosis Database Project?
Because of the small number of people that have been diagnosed with schwannomatosis, and because of the little amount of information that doctors have about what causes this condition and how to treat it, the International Schwannomatosis Database project is proposing to bring together people with this diagnosis and people studying and managing this condition around the world so that we might better understand the schwannomatosis and how best to treat it. We are collecting limited information on all schwannomatosis patients, their symptoms, and their management and medication whether receiving ongoing treatment, no treatment, or deceased. We hope that the information collected as part of the study will help improve how patients are cared for, with the goal of understanding more about the symptoms of schwannomatosis and making treatment as effective as possible.