An abstract to the guidelines can be found here:
Only subscribers to this journal will be able to see the full article, however the TSA is hoping to publish a patient-friendly summary of the guideline here on this website and in the Spring 2019 edition of SCAN.
For further information, please contact:
Sarah Roberts, Tuberous Sclerosis Association
Tel: 07870 210308
Notes to Editors:
Tuberous Sclerosis Complex (TSC) is a genetic disorder that causes growths to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. Some people with TSC experience epilepsy, developmental delay, learning and other disabilities, autism and challenging behaviour.
The Tuberous Sclerosis Association (www.tuberous-sclerosis.org) is the only UK charity dedicated to supporting people affected by TSC. The charity has invested over £10 million in support services and medical research.
The UK clinical guidelines on TSC were developed through a Delphi consensus process to reach agreed guidance for the management of patients with TSC in the UK. Following a literature search and review of international guidance, 51 experts in TSC took part in research to define the guidelines arriving at clinical consensus via responses to a detailed survey. The responders were neurologists, nephrologists, psychiatrist, psychologists, oncologists, general paediatricians, dermatologist, urologists, radiologists, clinical geneticists, neurosurgeons, respiratory and neurodisability clinicians.