TARN held its second annual meeting on the 2 July in London. Like last year, a mix of different health professionals and academics attended and the talks ranged from telephone cognitive behavioural therapy to deep brain stimulation trials.

Tourettes Action Research Officer Linnea Larsson summarises the discussions for you:

Improving the psycho-social experiences of adolescents with Tourette syndrome

Professor Georgina Jackson from the University of Nottingham spoke of this new three year research project funded by Tourettes Action after securing a grant from the BIG Lottery Fund in 2009. A second post doc, Dr Ruth Wadman, has recently been appointed to work on the project and she is due to start by the end of July. The results of the research at the end of the project will be used to develop a TA training package for teachers, in order to maximise children with TS’s ability to benefit from school.  

Telephone cognitive-behavioural therapy OCD in young people

Dr Cynthia Turner from the Maudsley Hospital in London spoke next about telephone cognitive-behavioural therapy (CBT) for obsessive-compulsive disorder in young people. CBT is normally delivered face-to-face, but accessing the hospital to receive treatment can be difficult for patients who don’t live close by. The purpose of the telephone pilot study was to help eliminate any such geographical or financial inequalities and to improve access and availability of CBT. The results from comparing pre-treatment with post-treatment (including up to 12 month follow-up) of telephone CBT in this pilot study was very positive, so the next step for the research team will be to compare the effectiveness of telephone CBT with face-to-face CBT, in proper randomized, controlled trials. Link to the abstract of the published paper is here.

Natural history and response to treatment

Dr Diane Ruge from the Institute of Neurology, UCL gave a talk about ‘Tourette syndrome: Natural history and response to treatment: Is there a link?’. Dr Ruge has recently, together with Professor Eileen Joyce and Professor John Rothwell, been awarded a USA TSA grant of $74,959 for another project on Plasticity and Motor Cortial Excitability in Tourette's Syndrome.

Cognitive functioning in Tourette’s syndrome

Professor Shelley Channon’s talk ‘Cognitive functioning in Tourette’s syndrome: is there evidence of inhibitory dysfunction?’ gave an overview by reviewing the many published papers in the field. She found that the majority of published studies included co-morbid disorders, however some papers had focused on TS alone and showed subtle impairments in cognitive functioning – such as in certain inhibitory tasks. However, there are also papers reporting an enhanced control in other types of cognitive functions in TS such as oculomotor switching (Link to the abstract of this paper). In the future, a greater understanding is needed of how the reported subtle impairments in cognitive functioning relate to everyday functioning in TS.

Launch of a new TARN HealthUnlocked website

Dr Matt Evans from HealthUnlocked spoke next about the launch of a new TARN HealthUnlocked website. This is a TA website for the members of TARN and other medical doctors interested in Tourettes which will help them to discuss views on Tourettes research, treatments and management. Members of TARN can register for TARN HealthUnlocked by following this link: http://tarn.healthunlocked.com/register.

European Society for the Study of Tourette Syndrome (ESSTS) and Deep Brain Stimulation Trial

Dr Hugh Rickards from Birmingham summarised the latest developments since his last TARN talk in 2009, on ESSTS and the UK deep brain stimulation (DBS) trial for TS. The ESSTS has been successful in securing an EU grant (COST) for administration of research initiatives and projects in the EU. The grant is not enough to fund research but is instead restricted to facilitate ongoing and new TS research, by funding meetings for example. The ESSTS provides a base for European clinicians to share new research data, network across EU nations and to plan TS training events, research projects such as a European TS Registry and to convene new large scale EU grant applications. We have previously reported on the recent activities of ESSTS, including the COST grant on our website.

Dr Rickards is part of the Birmingham research team which is planning the randomized controlled DBS trial for TS patients in the UK. The other team is based in Queen Square, London. They have all the relevant permissions to go ahead with the trial, but recruitment of patients has so far been quite slow. Patients who could be in the trial need to be over 20 years old, have severe TS which is not responsive to other treatments, will need to be able to participate in quite prolonged assessments, and need to have been on stable medication for the last 6 months. Find out more about participating in the UK DBS trial. 

Streptococcal Infections and Tourette's

Professor Gavin Giovannoni’s talk was entitled ‘Streptococcal infection, Tourette syndrome and OCD – connected or not?’. The conclusions from his talk was that post-streptococcal neuropsychiatric disorders are common (combined prevalence of >1%), they are possibly due to autoimmune reaction targeting the central nervous system, are possibly triggered by specific streptococcal serotypes/emm-types, and appear to be associated with systemic autoimmunity (adaptive and innate immunity). Professor Giovannoni currently supervises a PhD student who has done some promising early work on creating animal models to study these disorders, and what is now needed to progress research in this field are population-based prevalence studies, treatment studies, antibiotic prophylaxis studies, immunomodulatory studies and studies into prevention and vaccination.

Professor Gavin is also involved in the EU FP7 grant application preparations led by members of ESSTS.

The Professor Mary Robertson Prize 2010

Professor Giovannoni's talk was highly relevant to the winner of the Professor Mary Robertson Prize 2010, Michael Lim, who’s essay title was Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infection (PANDAS): A Distinct Subset of Tourette Syndrome? Professor Robertson presented him with the prize and a cheque for £250 at the end of the meeting.