Research into Tourette Syndrome

Research into genetics, brain imaging, behavioural science, neuroscience and neuropathology is helping us to make progress towards understanding the basis of Tourette Syndrome (TS).

Tourettes Action hopes this research will lead to improved diagnosis and medical treatments which have fewer side effects. Thanks to medical and scientific advances there is the possibility of exciting new technologies that will be available to researchers.

Other important aspects of research include increasing our understanding of the prevalence of TS, the quality of life among people affected by TS and risk and protective factors associated with the impact of TS. Results from research are used to increase public understanding as well as improving the lives and health outcomes of people affected by TS.

There are a number of research projects currently running, many of which are looking for participants. Read more about taking part in research projects.

Current research projects into TS

Below is a list of current research projects sponsored or supported by TA.

Children: 8-16 years old

• Online Remote Behavioural Intervention for Tics (ORBIT): University of Nottingham are recruiting young people (9-17 years) to engage in a research study looking at behavioural therapy for tics.  Participants will receive free behavioural therapy sessions over a 10 week period form the comfort of their own home.  Click for further information
• Nottingham researchers are now also looking for participants (children between 9 and 16 years) with either uncomplicated TS or TS with another condition (eg ADHD , ASD )
  If you join in, you will play a fun game using 2D robot in two sessions, held on consecutive days. It will also help us find out more about how well children learn and keep new habits. You will receive a shopping voucher for the value of £30 on completion of the study.
  Please contact 0115 9515316 for further details.

Young people & adults 12-28 years old

• Tics and brain activity: University of Nottingham carrying out an EEG study that investigates brain activity before a tic occurs.  Participants aged 12-28 years are wanted for this research study.  Patients will be paid for their time.  Read our News page for further information and find out more about Researcher Barbara Morera in our Spotlight series.

• University of Nottingham – Exercise, tics and the brain
  Researchers at the University of Nottingham are looking for participants with TS who are aged 13 - 20 years old to take part in a study which investigates what happens in the brain after exercise and how this reduces tics. The study will involve a short, fun exercise session and some brain scanning. An inconvenience allowance will be provided. Please contact: Katherine.dyke@nottingham.ac.uk for details.

Adults 18 years and over

• Genome sequencing in the family members of Tourettes Syndrome (TS) patientsTourettes syndrome sometimes runs in the family or occurs in twins indicating a genetic cause. Identifying this cause will be important to individual families and informing us about TS and therefore how we might treat it. The 100,000 genome project is an NHS England program designed to identify the cause of rare disorders by genome sequencing. We would like to enrol patients and family members of Tourettes Syndrome (TS) patients for genome sequencing (Involves a blood test) in this NHS project. If you are interested to know more please email Ifrah Iidow at the Institute of Neurology, London on (i.iidow@nhs.net), call 020 3448 4274
• Why Tourettes Matters?  Tourettes Action has created a survey about having Tourette Syndrome (TS) or a Tic Disorder.  This information will be very useful in raising awareness with the public, medical professionals, funders and policy makers.  Please allow 10-15 minutes to complete this survey.
• Pain? Complete a short survey by Tourettes Action about injuries, physical problems or pain due to tics.  Help us understand the issues facing people with TS.
• Mechanisims of response initiation and response inhibition in Tourette Syndrome.  Researchers at UCL are looking for pariticpants to tak part in their study that will involve two behavioural tasks and non-invasive brain stimulation. Travel expenses and time will be reimbursed.  Read here for more information
• A student from the University of Lincoln is carrying out a study and requires males (over 18 years old) for a student project looking at the relationship between Premonitory Urges, Tic Severity and Autism. Participants are asked to answer an online questionnaire taking 15-20 mins to complete. For more information about this study please contact Sarah Kemp This study received ethics from University of Lincoln Research Ethics Committee.

• The Social Care needs of Adults with Tourette Syndrome: An exploratory study A research team from the University of Kent is looking for adults with Tourette Syndrome to take part in a new and exciting study about the Social Care needs of adults with TS.  Read here for more information and how to get involved with the study.  And for further insights into the research behind the project, visit our Spotlight series.

• University College London (UCL) - Attentional and inhibitory mechanisms in Tourette’s syndrome.
  Researchers are looking for adults with a diagnosis of Tourette’s syndrome aged 18-65 years to take part in our study looking at the role of attention and inhibitory mechanisms in tic generation and management. Research will involve the completion of questionnaires about your condition, computer-based cognitive tasks and non-invasive transcranial magnetic stimulation (TMS) to measure motor system activity. If you are currently taking medication to help manage your tics and choose to take part, UCL will reimburse you for your time and travel expenses.  To find out more please contact Leanne Hockey

Parents only

• Genome sequencing in the family members of Tourettes Syndrome (TS) patientsTourettes syndrome sometimes runs in the family or occurs in twins indicating a genetic cause. Identifying this cause will be important to individual families and informing us about TS and therefore how we might treat it. The 100,000 genome project is an NHS England program designed to identify the cause of rare disorders by genome sequencing. We would like to enrol patients and family members of Tourettes Syndrome (TS) patients for genome sequencing (Involves a blood test) in this NHS project. If you are interested to know more please email Ifrah Iidow at the Institute of Neurology, London on (i.iidow@nhs.net), call 020 3448 4274
• Why Tourettes Matters?  Tourettes Action has created a survey about having Tourette Syndrome (TS) or a Tic Disorder.  This information will be very useful in raising awareness with the public, medical professionals, funders and policy makers.  Please allow 10-15 minutes to complete this survey. 
• Pain?  Complete a short survey by Tourettes Action about injuries, physical problems or pain due to tics.  Help us understand the issues facing people with TS
• Dr Douglas Woods online survey.  Under the direction of Dr. Douglas Woods, the Tic Disorders Clinic at Marquette University (USA) is looking for parents of children with tic disorders to complete a questionnaire examining the cultural impact of environmental reactions to tics.  Read more about the project and link to the survey here

In June 2015 a landmark international conference was held for professionals and Tourette Syndrome organisations in London, showcasing the latest research and future developments in the field of TS.  Find out more information about the conference in our News section

You can read about previous research projects in our Archive section

Want to know who's behind the research?  Read about our researchers and the studies they are pioneering here

Tourettes Action is a member of the  AMRC (Association of Medical Research Charities). AMRC membership is the hallmark of quality research funding. The AMRC is a network of over 130 medical and health research charities, supporting medical research in the UK.