Accession Number:

ADA449894

Title:

Tuberous Sclerosis Complex National Database

Descriptive Note:

Annual rept. 22 Sep 2004-21 Sep 2005

Corporate Author:

TEXAS UNIV AT DALLAS SOUTHWESTERN MEDICAL CENTER

Personal Author(s):

• Sparagana, Steven P.

Report Date:

2005-10-01

Pagination or Media Count:

72.0

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.

Descriptors:

• *CLINICAL MEDICINE
• *MEDICAL RESEARCH
• *NATURAL HISTORY
• COMPUTER PROGRAMS
• DATA BASES
• NERVOUS SYSTEM
• CANCER
• EPILEPSY
• ADVISORY ACTIVITIES
• OUTPATIENT CLINICS
• GENES
• DATA ACQUISITION
• COGNITION

Subject Categories:

• Medicine and Medical Research
• Computer Programming and Software

Distribution Statement:

APPROVED FOR PUBLIC RELEASE