On the 30th October 2010 we held our second research conference in Coventry. Below is a summary of all the different talks that were presented on the day:

Dr Victoria TischlerDr Victoria Tischler from the University of Nottingham talked about the psycho-social experiences of parents who have children with TS, showing results from a pilot study. By interviewing 7 parents, they identified certain themes that occurred in many of the parents’ experiences. The interviews showed that the parents thought that it was a relief to finally receive a diagnosis, that they had a poor experience of healthcare provision, experienced a lack of knowledge about TS amongst teachers, and that the TS had a stressful impact on the whole family. They also reported that different coping strategies such as karate and dancing helped the children take their mind of the tics. Dr Ruth Wadman next explained about the new three year research study which builds on the results from the pilot study and is in partnership with Tourettes Action. This study focuses on young people with TS directly, not just the parents. The project will run for three years and if you want to find out more or participate please click here.

Claire NusseyClaire Nussey, a trainee Clinical Psychologist from the University College London (UCL) gave a presentation on her preliminary findings from a study that is still ongoing. She is researching whether giving a Tourettes Action presentation about TS in school helps the child with TS, and how it is received by the classmates and teachers. Although her research study is not yet finished and has so far only completed interviews with two participants and their classmates and teachers, it did indicate that it overall was a positive experience and helped classmates and teachers to understand more about TS. Claire’s research study is for primary school children and their parents/teachers and if you want to take part, please click here for more information. To access our TS presentation, please click here.

Professor Shelley Channon who is based at UCL talked next about cognitive functioning and inhibitory dysfunction in TS. Cognition is ‘the process of thought’ and can be measured and assessed by using different psychological tests such as reading out the colour of different words that spell out another colour and then timing how long that takes people with TS compared with people without TS. This test measures the ability to inhibit the primary thought to read out the word and instead focus on saying what colour the word has. In most tests, TS people perform the same as people without TS, but some subtle impairment becomes apparent if the tests are made more difficult. The conclusion of Professor Channon‘s talk was that people with TS may have some subtle impairments in cognitive functioning but it is not known how much this difference actually affects everyday functioning in TS. If you want to participate in Cognitive research studies, please contact Tourettes Action on linnea@tourettes-action.org.uk.

Dr Anette Schrag is an Honorary Consultant Neurologist and Reader at UCL, and she gave a talk about streptococcal infections and TS. There has been controversy surrounding this area of research, which builds on the hypothesis that repeated streptococcal infections may cause tics and Tourettes in a subpopulation of people. Streptococcal infections are very common in children, much more common than Tourettes, so it certainly doesn’t give rise to TS in all Strep infected children. The hypothesis behind the Strep theory is that the antibodies that are developed as part of the immune system's response in the body after a Group A β-h Streptococcal infection have been shown to cross-react with (bind to) tissues in the body like the brain, which could cause damage to it. There are parts of the brain’s basal ganglia that - to the antibodies - look very similar on a molecular level to the Strep bacteria’s surface.The antibody can’t therefore distinguish between the brain and the Strep bacteria which it's meant to eliminate. Dr Schrag concluded her talk however by saying that there are many contradicting evidence and there is not enough evidence to support for example giving antibiotics as a prophylaxis to all children with a sore throat. Antibiotics would not help those who already have developed TS. If you want to read more about this type of research, go to Dr Stern's research blog: here, and here.  

Dr Hugh RickardsDr Hugh Rickards is a Consultant Neuropsychiatrist at the Tourette Clinic in Birmingham. He talked about the UK Deep Brain Stimulation (DBS) trial for TS and also gave an update of the recent activities of the European Society for Studies into Tourette Syndrome (ESSTS). So far, 60 DBS operations for TS have been carried out in the world, and the Tourette Syndrome Association in the US (TSA USA) has issued DBS guidelines for TS patients. DBS is only considered for people with very severe TS, who do not respond to any other treatment. Generally the outcomes have been good however just because the tics are better after the operation the patient might not feel better (might not remove the urge to tic, just the tics themselves). The upcoming UK trial is a randomised controlled trial, with 20 patients. Not only changes in tic severity, but also other measures such as the patient’s quality of life will be assessed. All the relevant permissions are now given to go ahead with this trial, but not many people have wanted to participate so far so the trial is not starting just yet. To participate in the trial or find out more, please click here.Dr Rickards next spoke about the ESSTS group, which recently received an EU COST action grant (500,000 Euro over 4 years), and members are now planning a larger research bid for a joint FP7 grant. The group are also writing European Guidelines for assessment and management of TS, organise training on Habit reversal training and are also discussing starting up a EU-case REGISTRY, collecting longitudinal data on TS patients.

(Left to right) Tourettes Action Chairman Robin Paxton, Dr Hugh Rickards and Dr Jeremy SternDr Jeremy Stern is a Consultant Neurologist at the St Georges Hospital in London, and the Honorary Medical Director of Tourettes Action. He gave an overview of some the different types of TS research going on in the world, stating four main research areas: Causation (genetics, streptococcus etc), Description (quality of Life, neuropsychology, phenomenology, epidemiology etc), Mechanism (brain imaging, neuropathology etc) and Treatment (drugs, botulinum toxin, behavioural treatment, social/educational management, deep brain stimulation).  Dr Stern thought future TS research will give more information about or even a solution to; genetic and non genetic mechanisms, a more convincing explanation of brain dysfunction in TS, effective drug treatment and/or: whether DBS should be used, plus other unpredicted forms of treatment. There will also be advances in optimising education and healthcare for TS.

Professor Mary RobertsonProfessor Mary Robertson, also from St Georges Hospital in London, gave a talk about the many faces of Tourettes Syndrome, pointing out that TS is a heterogeneous condition in so many ways. TS is a chronic tic disorder - other types of tic disorders also exist such as chronic motor or vocal tic disorder, transient tic disorder, and Tic disorder not otherwise specified (when tics are present, but do not meet the criteria for any specific tic disorder). The DSM (Diagnostic and Statistical Manual of Mental Disorders) criteria for diagnosing TS have changed over time, for example the age for latest onset has been increased gradually over time from 15 – 18 years old and the impairment criteria for diagnosis have been dropped. The DSM and ICD (International Classification of Diseases) criteria have always stipulated that TS is a unitary disorder, however Professor Robertson thinks this is not the case as the phenotype (face) of TS is often different from case to case. Many factors can affect the phenotype of TS, which depends on for example genetics, certain infections, problems with pregnancy and peri-natal complications (eg maternal smoking). There are also more factors (anxiety, stress, allergies, adverse life events and different medication) which all can exacerbate tics, so the full picture of what affects the phenotype of TS is very complex.  She further suggested a new nomenclature for the future which could involve up to 7 different types of TS, depending on what the specific TS phenotype is.