http://www.raredr.com/news/guidelines-tuberous-sclerosis-complex
Consensus Guidelines for Tuberous Sclerosis Complex

Guest post by TS Alliance


Tuberous sclerosis complex (TSC) is a genetic disorder that may affect nearly every organ system, but disease manifestations vary widely among affected individuals and some can be life threatening.  The diverse and varied presentations and progression of TSC are a challenge for optimal health care management with significant impact on cost and quality of life.  This page provides a brief summary of the latest consensus recommendations for monitoring and treating individuals with TSC. 




Healthcare professionals from around the world with expertise managing TSC met in June 2012 to update guidelines for the diagnosis, surveillance and management of TSC. The consensus reached as a result of the work before, during and after that conference has been published in the October edition of Pediatric Neurology.

Peer-Reviewed, Published Consensus Papers

The following papers are available free of charge with open access to anyone in the world.  The TS Alliance encourages sharing these links, or a link to this page (tsalliance.org/consensus) with healthcare providers.  Any future updates to these recommendations will also be posted on this page.

CME Opportunities

Please click here for more information about currently available CME opportunities for clinicians who treat patients with TSC.

Recommendations for Newly Diagnosed Individuals

For individuals who are not healthcare professionals, below is a brief summary of the consensus recommendations for monitoring and treating individuals with TSC. A summary of updated diagnostic criteria for TSC is available here.

Recommendations for Newly Diagnosed Individuals of Any Age

Additional Recommendations for Newly Diagnosed Infants and Children (Under 3 Years of Age)

Additional Recommendations for Newly Diagnosed Adults (18 Years of Age or Older)

Recommendations for Individuals Already Diagnosed with TSC

Recommendations for Individuals of Any Age

Recommendations for Infants and Children (Under 3 Years of Age)

Recommendations for Adults (18 Years of Age or Older)

For More Information

If you have any questions or need more information, contact:

Steve Roberds, PhD 
Chief Scientific Officer 
Tuberous Sclerosis Alliance
801 Roeder Road, Suite 750 
Silver Spring, MD  20910 
Telephone:  1-800-225-6872 or 301-562-9890 ext. 225
E-mail: sroberds@tsalliance.org

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