Building a Platform for Research in a Rare Disease:
The International Schwannomatosis Database
The goal of the International Schwannomatosis Database (ISD) is to foster collaborations that will facilitate treatments for schwannomatosis patients. 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.
How to become a participating International Schwannomatosis Database site.
Participating sites can enter data in the International Schwannomatosis Database.