Patient Participation

We are hoping to involve as many patients and families from around the world as possible to assist in understanding more about schwannomatosis and what treatments are needed. The International Schwannomatosis Database is attempting to bring together patients with schwannomatosis who want to help us learn more about this disease with researchers who are sponsoring trials.

If you or a family member are affected with schwannomatosis and are interested in enrolling in this database, please contact us by email and we will put you touch with a physician that can enroll you in the International Schwannomatosis Database. We have a two step process for long distance enrollment. First, the physician will take you through a consent process. Once you have completed the consent process, we will need to gather some medical information from you to determine if you meet diagnostic eligibility criteria to enroll in the database.