PhD studentship award: Understanding and Treating TSC-Associated Neuropsychiatric Disorders (TAND)
Grant holder: Professor Petrus de Vries (Loren Leclezio)
Institution/University: Division of Child & Adolescent Psychiatry, University of Cape Town
Project status: Completed – 31 Dec 2017
TSC is associated with many learning, behavioural, neurodevelopmental and psychiatric difficulties. Most families affected by TSC say that these are the problems they are most worried about. Almost everyone will have some of these difficulties in their lifetime, but only about 20% ever get treated. The 2012 Neuropsychiatry Panel coined the term TAND (TSC-Associated Neuropsychiatric Disorders) and recommended that all people with TSC should be screened for TAND every year. To assist with this process a TAND Checklist was developed. There are, however, so many possible TAND challenges that it is extremely difficult for families and clinicians to know where to start and how to find evidence-based suggestions of what to do next.
The researchers suggest that there may be distinct groups or natural clusters of TAND that will make further evaluations and specific treatments easier.
The overall study will be performed in three phases.
First 1,000 families and individuals with TSC will be asked to complete a TAND Checklist. Next statistical methods will be used to identify natural clusters of TAND problems.
In the second phase, there will be an electronic survey of 200 individuals with TSC and their families from all over the world, including the UK and Africa, to prioritise their concerns with regards to the natural clusters of neuropsychiatric difficulties. This will lead to the identification of the Top Ten TAND issues. Four focus groups with individuals and families from around the world will be conducted to discuss the evidence for and against specific treatments for these priority areas.
In the third phase of the a draft TAND Toolkit will be developed.
This project originally started with the help of TAND-researcher; Loren Leclezio. Sadly, Loren passed away over the weekend of January 13/14 2018. Not only did Loren contribute hugely to our understanding of TAND, she also had immense compassion for the entire TSC community: Read more HERE