University of Nottingham: Clinical trial launched for wearable device to control Tourette Syndrome
A wearable wrist device that delivers electrical pulses to reduce the amount and severity of tics experienced by individuals with Tourette Syndrome (TS) is being tested in a UK-wide clinical trial.
Previous research by scientists from the University of Nottingham’s School of Psychology and School of Medicine used repetitive trains of electrical stimulation to the median nerve (MNS) at the wrist to entrain rhythmic electrical brain activity – known as brain oscillations – associated with the suppression of movements. They found that rhythmic MNS is sufficient to substantially reduce tic frequency and tic intensity, and remove the urge-to-tic, in individuals with TS.
University of Nottingham spin-out company Neurotherapeutics Ltd has now developed a prototype device, worn like a wrist-watch, that can be used by participants in their home setting with support from researchers in Nottingham.
Our previous research successfully used pulses of electrical current, delivered at the wrist, to increase the strength of brain oscillations that ordinarily must be reduced in strength to generate a movement. This resulted in a significant reduction in tics and in many cases removal of the urge-to-tic. Now we are taking this further by testing the use of a wearable device in a larger group of individuals, this is a significant step towards realising our goal of having a commercial product available for the TS community within a couple of years.
The trial will expand on the previous research and will involve 135 individuals with TS. The group testing the device will be shown how to use the device and will then be asked to use it at home at the same time each day for 15 mins for a period of one month. Selected people will also be videoed each day and each week participants will give feedback on their experience.
TS is a neurodevelopmental condition that is usually diagnosed between the ages of eight and 12. It causes involuntary sounds and movements called tics. Tics are repetitive, stereotyped movements and vocalisations that occur in bouts, typically many times in a single day, and are often preceded by a strong urge-to-tic, referred to as a premonitory urge (PU).
13-year-old Mylo is one of the participants in the trial. His parents noticed unusual symptoms when he was a toddler, but he wasn’t diagnosed until he was 10 after his tics became more noticeable. Talking about how the conditions affects him Mylo said: “I try not to let it affect my daily life, but it makes me really tired to try to supress my tics at school. I know I don’t have to do that but I want to be like everyone else and not stand out and I don’t want people to comment on it. It also makes it hard to do certain activities, like ride a bike, as I have fallen off due to tics in the past. As I get older I have become more aware of how other people might see me and judge me.”
Mylo has worked with a child psychologist on tic blocking techniques but found this difficult and tiring to maintain, he and his parents were keen to volunteer for this trial to see if this device can make a difference and help improve life for other people with Tourette’s in the future.
Mylo continues: “I really hope that the trial shows that this device can make a difference in the need/urge to tic, for those that want it. I don’t feel like I need to be ‘fixed’ but I think that if there is an option to make life easier for people with Tourette’s it could be life changing – to not have to worry so much about what your body might do, to not be ‘different’ in the classroom, to go on bike rides with my friends – all these things will be life changing for me. With Tourette’s as a child there is always the worry that it could change or get worse as you get older and go through puberty so to know that there is something that could help if it does would help ease my worries too.”
Barbara Morera Maiquez, Head of Research and Development at Neurotherapeutics Ltd is managing the trial, she commented: “We’re really excited to be taking the next step with this research as we already know from previous work what a remarkable effect the stimulation has on reducing tics, especially in those people with the most severe tics. We hope that this trial will show that the device can be used effectively by people at home to control tics and help us achieve our aim of creating an effective treatment for Tourette Syndrome.”
The research is being funded by the charity Tourettes Action, NIHR Nottingham Biomedical Research Centreand Neurotherapeutics Ltd. From May 15th Tourettes Action is running Tourette’s Awareness Month to de-stigmatize TS and show the general public what the reality of TS looks like, dispelling some of the myths that surround it. Emma McNally, Chief Executive Officer of Tourettes Action said: “It’s shocking that a condition so prevalent is still so badly misunderstood. More than 300,000 people in the UK are known to have Tourette’s, but that number is probably much, much higher. We want to use Tourette’s Awareness Month to help raise awareness of this condition and help to remove the stigma. With awareness, comes acceptance, and this is a key part of our work – enabling people who live with Tourette’s to be fully included in society. People with Tourette’s often feel isolated and excluded because the level of awareness in society is so low. It’s our goal to change that.”
I’ve heard from parents who talk of holding their child in their arms in tears, unable to stop motor tics that are so repetitive they become physically painful. Adults who describe muscle spasms so intense and so uncontrollable that they are in extreme pain and yet are unable to stop the tics. I hope that the trial will prove to be a useful self-managing treatment to help people better manage and control their tics. It could potentially improve the lives of so many people.
Emma McNally, Chief Executive Officer of Tourettes Action