Tuberous Sclerosis Complex National Database

Abstract

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 development of a comprehensive clinical database (DB) to be used for both research and clinical purposes. The Consortium proposes to characterize the natural history of tuberous sclerosis complex (TSC) through development of an internet-based DB to collect comprehensive data on individuals with TSC. To date we have established Working Groups (WG) to define the specific aims for the natural history study; established an Advisory Panel (AP) to serve in an advisory capacity to the Consortium; established a Steering Committee (SC) to oversee development of the DB, and assist in drafting a Consortium Agreement by which members of the TSCCDC will adhere; held meetings to discuss development of data collection tools and drafted a data collection tool. In July of 2005 TSA assumed control of the development process and contracted with a computer software designer to begin development of the DB.

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Document Details

Document Type
Technical Report
Publication Date
Oct 01, 2005
Accession Number
ADA449894

Entities

People

  • Steven P. Sparagana

Organizations

  • University of Texas at Dallas

Tags

Communities of Interest

  • Human Systems

DTIC Thesaurus Topics

  • Brain
  • Cardiovascular Physiological Phenomena
  • Computer Programs
  • Epilepsy
  • Genetics
  • Health Services
  • Medical Personnel
  • Seizures

Readers

  • Aquatic Ecology
  • Clinical Trial Research.
  • Software Engineering.