Adults with TS in Sussex needed for research study

Posted on 11 May 2015

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Research helping to understand more about TS & possible treatments

THIS STUDY IS NOW CLOSED JANUARY 2016

In autumn 2014, the University of Sussex ran a research involvement survey with the help of Tourettes Action and its members. In advance of starting a new set of brain scanning studies at Sussex, we wanted to get feedback from people with Tourette Syndrome and their families on both our research ideas, and on how we could tailor our research processes to best accommodate our participants’ needs.

Our new research aims to uncover more about the brain basis of Tourette Syndrome, and in particular the role that anxiety may play in tics. As part of this, we plan to look more deeply at the individual differences among people with Tourette Syndrome in symptoms and in brain scans. We hope that in the future, this can be used to better tailor treatments such as behavioural interventions or drug therapies to the individual person.

In our new studies, we plan to use a variety of brain scanning techniques, with adults age 18+. The brain scanning techniques are magnetic resonance imaging (MRI), electroencephalography (EEG), and transcranial magnetic stimulation (TMS). MRI uses a strong magnet to take pictures of brain structure and activity, whilst EEG uses a hairnet of electrodes to monitor electrical signatures of brain activity. TMS involves the application of weak magnetic stimulation at the scalp to briefly change brain activity in the underlying region of the brain. Each of these established research methods allows safe, non-invasive investigation of human brain function.

Although these permit extremely valuable windows into brain function, we know they can be daunting for research participants, as brain scanning is not an everyday experience. In addition, with these types of brain scanning techniques, movement by the participant during the study can affect the quality of the brain scanning data. With these issues in mind, we were keen to hear from people with Tourette Syndrome and their families, to receive feedback on practical steps we could take to minimise apprehension over taking part in our research, and to get the best quality brain scanning data possible.

Tourettes Action kindly sent out an email link to an online survey for us. The invitation to participate in the survey was only sent out to members of Tourettes Action outside our geographical area. This was to avoid consulting members of Tourettes Action who live near the University of Sussex, as we hope local Tourettes Action members may be interested in participating in the new studies, once we receive ethical approval.

We are very grateful to those members of Tourettes Action who took the time to read about our proposed studies, and provide us with carefully considered, insightful, and valuable feedback. So that their tips and strategies for minimising participant discomfort and getting good quality brain scanning can be made use of by as many researchers as possible, we are currently writing a report on the survey, which we hope to publish in an academic journal. Once the report is published, we will of course share a link to it with Tourettes Action. In the meantime, we give a few highlights of the survey results below.

Amongst the survey respondents, there was a high commitment to participating in research in order to advance our knowledge of Tourette Syndrome and improve treatment options. Another important motivating factor was the opportunity to gain a better understanding of one’s own or family member’s condition. Respondents identified a variety of practical factors influencing decisions to participate in research, including how people felt about the brain scanning procedures, ease of participation regarding travel to study location, and availability and flexibility of study appointments. Building trust with the researcher came out as a key way to minimise participants’ apprehension, for example through carefully explaining each procedure and ensuring all members of the study team are aware of and are sympathetic to the symptoms of TS.

Our first study is starting in summer 2015, and we hope adult members of Tourettes Action within travelling distance of the University of Sussex will be interested in taking part. As well as people with Tourette Syndrome, we also need a control group of participants without the condition – so even if you do not have Tourette Syndrome yourself, we would still love to hear from you. You can read more about the upcoming research on the study website, and if you are interested in participating you can also get in contact with the lead researcher Dr Charlotte Rae and on 01273 873787.

If you have questions about this or any other Tourettes Action supported research project please contact Seonaid Anderson (Research manager).

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