Tuberous Sclerosis Complex National Database
Final rept. 22 Sep 2005-21 Sep 2006
TEXAS UNIV AT DALLAS SOUTHWESTERN MEDICAL CENTER
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A Consortium was formed in July 2002 by the Tuberous Sclerosis Alliance TSA and tuberous sclerosis TS clinic personnel nationwide to begin discussions of natural history studies and the development of a comprehensive clinical database DB to be used for both research and clinical purposes. The Consortium proposed to characterize the natural history of tuberous sclerosis complex TSC through the development of an internet-based DB to collect comprehensive data on individuals with TSC. The DB was developed through the collaborative efforts of clinicians and scientists from all major TSC clinics in the United States and the TSA. In July of 2005, TSA assumed control of the development process and contracted with a computer software designer, Tesuji, Inc., to begin development of the DB. Working Groups, a Steering Committee, and an Advisory Panel worked diligently to develop data collection points that were used by Tesuji, Inc. in the development phase. The scope of this award allowed the authors to establish the administrative framework for the development of the DB and to bring development to its final stages. DB development is complete and is now being overseen by the TSA. Once the DB is fully online, subjects will be recruited on a voluntary basis from multiple tuberous sclerosis clinics throughout the United States, possibly from select international sites, as well as the TSA. A trial of the DB is scheduled to begin in Fall 2006 at two pilot sites. Data is to be collected both retrospectively and prospectively, with the intent to capture data longitudinally.
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