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My experience of being a research participant

Posted Tue 4th Sep 2018 at 11:00
by Ashley Curry


Ashley talks about the research he was recently involved with at University College London

I have been involved with research over the last 3 years, mainly focusing on OCD. (Obsessive Compulsive Disorder) sharing my lived experiences of the condition and overseeing up and coming research regarding ethics and validity.  I have found it very interesting, especially seeing the end results and outcomes.

Recently, I took part in research as a person with lived experience of Tourette Syndrome.  And the following blog gives a summary of what the research is about and what I got from the experience.

The study I was involved with is focused on finding out whether attentional and/or inhibitory mechanisms are altered in Tourette syndrome, and how these relate to tic severity.

Here is further explanation about what attentional and inhibitory mechanisms are

Theories underlying tic generation in Tourette Syndrome implicate impairments in attention, and response initiation and inhibition. Response initiation describes how we make decisions and movements, whereas response inhibition describes how we inhibit ourselves from responding or cancel an ongoing movement. Hence, in the context of response inhibition, tics might arise from patients being unable to inhibit their decision or movement. With regards to deficits in attention, which may occur in Tourette Syndrome, tics may come about because a patient is less able to divert their attention away from their urges or tics.

We know that, in the nervous system, there are excitatory and inhibitory mechanisms that occur in balance. In Tourette Syndrome, it is believed that in brain areas corresponding to movement, there is disruption in this balance, leading to a lack of inhibition and problems controlling movements.

The three reasons behind this research are:

  • Exploring whether mechanisms of movement initiation and inhibition are altered in Tourette Syndrome and if so, how the brain’s motor system might explain these changes. 
  • As Tourette’s syndrome varies in severity across patients, the research is also looking at how tic severity affects motor initiation and inhibition.
  • Tourette Syndrome can coexist with obsessive compulsive disorder (OCD) or attention deficit hyperactivity disorder (ADHD). The research will also look at whether these coexisting disorders have an impact of attention or movement initiation and inhibition.

Overall the researcher's aim is to explain how changes in the brain explain the clinical features of Tourette Syndrome.

Vishal who is the Researcher, was very helpful from the first point of contact, and any questions or concerns I had were answered really well.

I travelled down to London, and on arrival at University College of London, Institute of neurology, Vishal was there to meet me in reception

We had some great conversations before the research took part, about how my Tourettes manifests itself , and importantly what the research was hoping to discover, and what will happen during the process of my participation.

Firstly I had to follow left / right arrows on the screen using the keyboard, and had to try and not press if a red cross was above the arrow, and this involved two tests, one for right and left .

The third test, involved being “wired up”  via transcranial magnetic stimulation (TMS) which can measure changes in the function of the nervous system controlling movement.  The device measured my right hand movements, and at no time was there any discomfort.

My final task involved using the keyboard once a arrow appeared from behind a mass of scribble, you press 'a' for left , 'L' for right, which was over 3 sets of roughly 10 minutes each . Vishal said he would explain afterwards what it’s about.

Unbeknown to me, before the scribble appeared a arrow came up for 100th of a second ,which your brain recognises , and has an influence on your reaction, which is why when I went to press 'a' , I ended up pressing L, so it’s like a tic response, unable to suppress!!

The day was great, Vishal was brilliant and the whole experience was so worthwhile. It is important to engage with research, it will help us make the future brighter for those who live with Tourette’s Syndrome.

Massive thanks to Tourettes Action and Dr.Seonaid Anderson for organising lots of research, please do get involved if you have lived experiences of Tourette Syndrome.

Thanks again Vishal, look forward to the outcomes!


If you are interested in being a research participant, take a look at current projects and sign up to the Tourettes Action research participant registry.


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