Tourettes Action Research Network / European Society for the Studies into Tourette’s Syndrome Conference, May 13 – 14th, 2011.
This year was the first meeting held jointly between Tourettes Action Research Network (TARN) and European Society for the Studies into Tourette’s Syndrome (ESSTS).
Over 70 delegates attended, with an excellent programme consisting of key note speakers, plenary sessions and short talks. This year’s Mary Robertson Prize was awarded to Kate David and Ben Savery – congratulations to them both! Below is a short summary of the conference presentations.
Professor Veit Roessner gave an excellent update on clinical guidelines for Tourette’s syndrome and suggestions for further action. Prof. Roessner talked about quality of life which is an important issue, especially for people with Tourette’s. Measuring quality of life is also thought to be more important than measuring tic severity (which is often too variable both within and between people ). Quality of life could also be self-assessed, which may be more accurate as a person’s own view of their quality of life could be very different to that of someone else’s. Self-assessed quality of life could be measured frequently and inexpensively and could offer a more accurate way to assess the impacts of Tourette’s syndrome.
Dr Michael Orth gave an interesting talk on whether a Huntington’s disease type registry would work for Tourette’s syndrome. This may provide a useful network by which people could be connected. Following this, Dr Tammy Hedderly and Neil Williamson discussed a new venture called HealthTracker – a web-based self rating tool that could assists in measuring quality of life. In particular, this tool seems very user-friendly for children. It is hoped that the tracker can assess quality of life over a longer period of time.
Dr Gary Heinman and Pieter Hoekstra talked about the international genetics collaboration, based in the New Jersey Centre for Tourette syndrome Sharing Repository. Here, a highly useful DNA bank could be used by researchers to identify associations between genetic variant with Tourette’s syndrome. Dr Heinman also stressed the importance of rare genetic variants (i.e. <1% in the population) that may be very useful to identify such associations. Similar advances have been made in the field of autism and schizophrenia, and it is hoped that this repository will provide a useful platform to achieve similar success with Tourette’s.
Professor Michael Trimble gave an excellent overview of the neuro-anatomical concepts of behaviour revealed through Tourette’s syndrome. Particular themes covered were the role of the basal ganglia and cortex, as well as the complex interactions between different regions of the brain. Discussions then moved on to the proposal for the use of Tiapride in Tourette’s syndrome by Adrea Ludolph.
The conference also incorporated a series of short talks, the first of which was Christos Ganos, who discussed tics in autism. Interestingly, these tics appeared to double in frequency when participants took part in tasks – the opposite of what usually happens in Tourette’s syndrome. Following this, Kate David gave an insight into the childhood predictors of quality of life in Tourette’s syndrome. No evidence was reported to predict tic severity, although tics tended to decrease in severity with time. The main childhood predictors of health related quality of life were tic severity, premonitory urges and family history. Collectively these 3 factors accounted for 33% of health related quality of life variance. Interestingly, OCD and ADHD were not found to be predictors for quality of life. Rhiannon Worrall discussed treatment practices for Tourette’s followed by Dr Jeremy Stern who gave an account of the long term follow up and extra-pyramidal side effects of Aripiprazole for Tourette’s syndrome. The short talks were concluded by Alan Apter who discussed objective and subjective measures of the influence of environmental factors on tic expression. Professor Andreas Hartman and Gavin Giovannoni concluded to conference with two key note sessions entitled Gilles de la Tourette Syndrome; back to the future and autoimmune mechanisms in Tourette’s syndrome.
Overall, the conference was a great success. The feedback from the meeting has been very positive and we hope to build on this in future years. Next year, the TARN meeting will probably be in July in London and we will be in touch as soon as we have more details.