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:12/8/2016)... -- Australia Glaucoma Surgery Devices Market Outlook to ... Glaucoma Surgery Devices Market Outlook to 2022", provides ... Devices market. The report provides value, in millions ... prices (USD) within market segement - Glaucoma Drainage ... and distribution shares data for each of these ...
(Date:12/8/2016)... 2016 KEY FINDINGS The global ... 2017-2023. Various reasons for growth of the medical lifting ... of chronic diseases, high recovery cost of injuries and ... Medical lifting sling refers to an assistive device that ... slings connect to the lift and hold the patient. ...
(Date:12/8/2016)... Lilly and Company (NYSE: LLY ) today ... at the 9 th Clinical Trials on Alzheimer,s ... meet the primary endpoint in the EXPEDITION3 clinical trial, ... dementia due to Alzheimer,s disease (AD), and Lilly will ... of mild dementia due to AD. ...
Breaking Medicine Technology:
(Date:12/9/2016)... (PRWEB) , ... December 09, 2016 , ... ... miniature, folded, pharmaceutical inserts and outserts. As a means of expanding capabilities ... addition will enable Flottman to individually code professional inserts (PIs) and patient package ...
(Date:12/9/2016)... NY (PRWEB) , ... December 09, 2016 , ... ... and Drug Dependence, Inc. (NCADD) is recommending the film Whispering Spirits ... and the District of Columbia as an education tool in the war against teen ...
(Date:12/9/2016)... ... December 09, 2016 , ... An inventor from Cana, Va., wanted ... all types of amusement park rides. , The patent-pending SAFETY STRAP FOR AMPUTEES improves ... use and could be set up in a matter of minutes, or even seconds. ...
(Date:12/9/2016)... ... 09, 2016 , ... The Holy Name Medical Center Foundation ... on December 3rd, to benefit Holy Name Medical Center's programs and services. More ... over $1 million - the largest event in the Center's history, both in ...
(Date:12/9/2016)... ... December 09, 2016 , ... "I had a terrible time trying to get ... thought that if the nebulizer had a more child-friendly design, then children would be ... developed the patent-pending NEBY to avoid the need to deliver medication via a nebulizer ...
Breaking Medicine News(10 mins):