New Guidelines Released for Diagnosis, Surveillance and Management of TSC

The Tuberous Sclerosis Alliance (TS Alliance) has formally announced newly updated clinical consensus guidelines for the diagnosis, surveillance and management of tuberous sclerosis complex (TSC).

The 2012 International Tuberous Sclerosis Complex Consensus Group comprised 79 specialists from 14 countries. The recommendations are relevant to the entire lifespan of the patient, from infancy to adulthood, including both individuals where the diagnosis is newly made as well as individuals where the diagnosis already is established.

Dr Chris Kingswood, who co-chaired the nephrology group said; “ These new, evidence-based guidelines will deliver significant benefit for people with TSC.  This is because we now have the tools we need to provide the most up to date care and treatments.  This will improve outcomes for individuals, regardless of the severity of their TSC or their age.”  

On receiving news of the publication of the guidelines, Jayne Spink, CEO of the Tuberous Sclerosis Association said,

“It is vitally important that these guidelines are implemented.  The TSA is fully committed to supporting their rapid uptake by the NHS.”

To communicate the recommendations to healthcare professionals, the October issue of Pediatric Neurology includes two peer-reviewed papers detailing the new guidelines.

You can view the full text of these papers here:

www.sciencedirect.com/science/article/pii/S0887899413004918

www.pedneur.com/article/S0887-8994%2813%2900490-6/fulltext