International Schwannomatosis Database
| Information | The International Schwannomatosis Database (ISD) 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. Goal Thus far, there has been very limited research focused on schwannomatosis, in part because it is considered a rare disease and in part because there are limited resources dedicated to the syndrome. A major obstacle to the advancement of translational and clinical research is locating enough patients to collect meaningful data. The ISD is designed to be a platform from which multiple research endeavors can be launched, facilitating connection between affected individuals willing to participate in research studies and researchers looking to identify subjects who might be appropriate for studies. The registry will collect and organize information on all schwannomatosis patients, such as their symptoms, their management and medication, and whether biological specimens are available for research. By connecting researchers with potential subjects who have undergone basic screening and expressed a desire to take part in research, the ISD hopes to accelerate the understanding of the natural history of schwannomatosis and the identification of effective management and treatment strategies. |
| Registry Location | International - available to Australians |
| Registry Participation | Voluntary |
| Registry Contact | Please contact us with any general questions about this project. We are hoping to involve as many patients/families and as many medical centers from around the world as possible to assist in understanding more about schwannomatosis and what treatments are needed. |
| Adding New Patients to Registry | 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. |
| Please see the website for more information |