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The Schwannomatosis International Database
Allan J. Belzberg, MD; Dusica Babovic-Vuksanovic, MD; Jaishri Blakeley; Felix Bokstein; John A. Carrino, MD; Shlomi Constantini; Gypsamber D’Souza; Gareth Evans; Rosalie Ferner; Jan Friedman; Marco Giovannini; Gordon Harris; Jennifer Haythornthwaite; Cynthia Hingtgen; Theo Hulsebos; Lori Jordan; Michel Kalamarides; Bruce Korf; Fawn Leigh; Guy Leschziner; Antonio J. Machado, MD; Viktor Mautner; Laura Papi; Scott Plotkin; Bernd Scheithauer; Anat Stemmer-Rachamimov; Xiaobu Ye; Kaleb Yohay; Amanda Bergner
Johns Hopkins University, Baltimore, MD, USA
Schwannomatosis is a recently recognized disorder, with diagnostic criteria first published in 2005. Little is known about the natural history of schwannomatosis. It is thought to be a rare disorder with the incidence still to be determined. Better understanding of natural history will lay a foundation for future advances in patient care, including treatment trials.
A robust database designed to address critical, hypothesis-driven research questions is a powerful mechanism for pooling data from multiple centers. The specific aims of this project were: (1) to coordinate national and international experts in schwannomatosis to formulate key research questions; (2) to translate key questions into specific data points; and (3) to design a web-based database to collect data across international treatment centers. Preliminary data would be gathered and analyzed to support an application for future funding to grow the project. The study period for this project is 24 months, ending in May 2011.
A collaboration of international schwannomatosis experts from fifteen institutions in eight countries has been established, and this group has come together to agree upon key questions based on current knowledge. The Schwannomatosis International Database (SID) was then designed and built around these core questions. The data points were chosen specifically to provide adequate information to researchers while remaining de-identified to protect patient confidentiality. The database is designed to be a platform from which multiple research endeavors can be launched, assisting researchers to identify subjects who might be appropriate for their studies.
A steering committee composed of experts in the fields of schwannomatosis, database design and management, and clinical trials has been established. Individual researchers with a research question can submit a letter of intent to the SID Steering Committee. The research will be reviewed and, if approved, the database will be queried to connect the researcher with the centers that manage the patient(s) of interest. Data from four IRB-approved sites is being entered for preliminary analysis. The first letter of intent for a research study utilizing data from the SID has been received by the Steering Committee and is currently under consideration.
This project has increased communication and collaboration within the schwannomatosis community of experts. It will also facilitate connections between researchers studying schwannomatosis and patients wanting to participate in research. Suggestions for trial design and evaluation of relevance to the schwannomatosis community will be evaluated through the process of steering committee review of letters of intent.
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