Navigation Links
New Guidelines Released for Diagnosis, Surveillance and Management of Rare Genetic Disease Called Tuberous Sclerosis Complex
Date:9/23/2013

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." 

(Logo: http://photos.prnewswire.com/prnh/20130923/DC79410LOGO )

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 www.tsalliance.org/consensus.

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 www.tsalliance.org or call 800-225-6872. 

CONTACT  
Jaye Isham 
Vice President, Communications Strategy
301-562-9890, jisham@tsalliance.org


'/>"/>
SOURCE Tuberous Sclerosis Alliance
Copyright©2012 PR Newswire.
All rights reserved

Related medicine technology :

1. Alliance for Rational Use of NSAIDs Calls for Appropriate Use of NSAIDs in Wake of New FDA Guidelines on Opioid Use
2. Multiple International Breast Cancer Guidelines Confirm Use of Agendia Tests for Prognostic, Predictive Information in Cancer Treatment Decisions
3. EECP Therapy Receives Class lla Recommendation in European Society of Cardiology Guidelines for the Management of Stable Coronary Artery Disease
4. EAACI Publishes the First European Guidelines for food-Allergy Sufferers
5. Sinovac Beijing Obtains China GMP Certificate Under the New GMP Guidelines
6. Quest Diagnostics Launches Dementia Diagnostic Panel, First in Industry for Treatable Forms of Cognitive Impairment Based on Medical Guidelines
7. AVMA updates euthanasia guidelines
8. Nelson Laboratories to Present Cleaning Validation Guidelines at BIOMEDevice San Jose
9. Colorcon, Inc. Quality by Design (QbD) Expertise Beneficial in Compliance with New FDA Guidelines
10. Denmarks National Telemedicine Action Plan To Be Built On Continua Health Alliance Design Guidelines For Personal Connected Health Devices
11. The American Society of Interventional Pain Physicians Announces Guidelines for Responsible Prescribing of Pain-Killers for Chronic Non-Cancer Pain
Post Your Comments:
*Name:
*Comment:
*Email:
(Date:6/23/2016)... , June 23, 2016 ... CAPR ), a biotechnology company focused on ... today announced that patient enrollment in its ongoing ... Duchenne) has exceeded 50% of its 24-patient target. ... in the third quarter of 2016, and to ...
(Date:6/23/2016)... , June 23, 2016 , ... on Thursday, July 7, 2016 , , , , LOCATION: ... , , , , EXPERT PANELISTS:  , , , ... Senior Industry Analyst, Christi Bird; Senior Industry Analyst, Divyaa Ravishankar and ... The global pharmaceutical industry is witnessing an exceptional era. ...
(Date:6/23/2016)... LONDON , June 23, 2016 ... environments  Oticon , industry leaders in ... the launch of Oticon Opn ™, the world,s ... world of possibilities for IoT devices.      ... Opn, Oticon introduces a number of ,world firsts,: ...
Breaking Medicine Technology:
(Date:6/27/2016)... ... 2016 , ... "FCPX editors can now reveal their media with growing colorful ... Christina Austin - CEO of Pixel Film Studios. , ProSlice Color brings the ... can now reveal the media of their split screens with growing colorful panels. , ...
(Date:6/26/2016)... ... ... Quality metrics are proliferating in cancer care, and are derived from many ... the beholder, according to experts who offered insights and commentary in the current issue ... the full issue, click here . , For the American Society of Clinical ...
(Date:6/26/2016)... ... June 26, 2016 , ... Many women are confused ... endometriosis. These women need a treatment plan to not only alleviate symptoms and ... help for preservation of fertility and ultimately achieving a pregnancy. The specialists at ...
(Date:6/25/2016)... ... 25, 2016 , ... First Choice Emergency Room , the largest network ... the Medical Director of its new Mesquite-Samuell Farm facility. , “We are pleased ... location,” said Dr. James M. Muzzarelli, Executive Medical Director of First Choice Emergency Room. ...
(Date:6/24/2016)... (PRWEB) , ... June 24, 2016 , ... A recent ... that most people are unfamiliar with. The article goes on to state that individuals ... also many of these less common operations such as calf and cheek reduction. The ...
Breaking Medicine News(10 mins):