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New Guidelines Released for Diagnosis, Surveillance and Management of Rare Genetic Disease Called Tuberous Sclerosis Complex

SILVER SPRING, Md., Sept. 23, 2013 /PRNewswire-USNewswire/ -- Today, the Tuberous Sclerosis Alliance (TS Alliance) formally announced newly updated clinical consensus guidelines for the diagnosis, surveillance and management of tuberous sclerosis complex (TSC). To communicate the recommendations to healthcare professionals, the October issue of Pediatric Neurology includes two peer-reviewed papers detailing the new guidelines – one entitled "Tuberous Sclerosis Complex Diagnostic Criteria Update: Recommendations of the 2012 International Tuberous Sclerosis Complex Consensus Conference" and the other, "Tuberous Sclerosis Complex Surveillance and Management: Recommendations of the 2012 International Tuberous Sclerosis Complex Consensus Conference." 

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Darcy A. Krueger, MD, PhD, of Cincinnati Children's Hospital Medical Center, and Hope Northrup, MD, of The University of Texas Medical School at Houston, wrote both papers in Pediatric Neurology.  Drs. Krueger and Northrup served as co-chairs of the TS Alliance's 2012 International TSC Consensus Conference, which involved 79 TSC experts from 14 countries to develop the new guidelines. 

Because TSC involves multiple systems in the body, the conference included specialists in genetics, neurology, epilepsy, cardiology, neurodevelopment and behavior, dermatology, dentistry, nephrology, pulmonology, ophthalmology, gastroenterology, endocrinology and others.  Steven L. Roberds, PhD, Chief Scientific Officer of the TS Alliance, led the conference's implementation and said, "It was truly impressive to witness all these compassionate experts from varying fields work together so effectively toward the common goal of ensuring the best care for people with TSC."

"These two consensus papers will help to guide our diagnosis and management strategies for TSC until enough additional information accumulates to justify the next revision," added E. Steve Roach, MD, Editor-in-Chief, Pediatric Neurology.

"The TS Alliance is thrilled to announce these new 'gold standards' for TSC diagnosis, surveillance and management," explained Kari Luther Rosbeck, President & CEO of the TS Alliance.  "Prior guidelines were based on a 1998 TSC consensus conference, and since then, tremendous advances have been made in the field of TSC, particularly in the growth of new treatment options.  We believe these new clinical consensus guidelines will improve the quality of life of everyone touched by this disorder."

TSC is a genetic disease affecting approximately 50,000 in the United States and up to 1 million worldwide.  It causes tumors to form in vital organs, primarily the brain, heart, kidneys, skin, eyes, liver and lungs. TSC is also the leading genetic cause of both epilepsy and autism.  Currently, there is no cure.

According to Dr. Krueger, "TSC's manifestations vary widely among individuals and can sometimes even be life threatening, so accurate clinical consensus guidelines are critical to ensure optimal healthcare management. We are thankful to everyone who worked so hard at the 2012 conference."

"Gathering so many experts was crucial to ensure the updated recommendations benefited from a wide range of diverse perspectives," added Dr. Northrup. "Moreover, rapid advances are occurring in TSC treatment research, so we are excited about the new focus on the importance of comprehensive and coordinated care outlined in the guidelines."

For more details about the new TSC clinical consensus guidelines, visit

Formed in 1974, the TS Alliance is the only U.S.-based non-profit organization dedicated to finding a cure for TSC while improving the lives of those affected.  For more information, visit or call 800-225-6872. 

Jaye Isham 
Vice President, Communications Strategy

SOURCE Tuberous Sclerosis Alliance
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