Dystonia UK and Manchester Metropolitan University are looking for the final participants to take part in an exciting study to improve outcomes for botulinum toxin injections.

Researchers at Manchester Metropolitan University are collecting data from 150 people with neck dystonia and 150 people without. They're gathering this data to turn a proven concept (published here) into a solid, clinically approved tool. So far over 100 people have taken part and we're now looking for the final participants!

Get involved!

To get involved in this exciting piece of research you must be:

• 18 or over
• Available for approximately 2 hours
• Able to travel to the Institute of Sport at Manchester Metropolitan University
  (Parking is available and expenses for travel within the UK will be covered)

Once you've registered your interest, a member of the study team will call you to discuss the procedures and explain all inclusion and exclusion criteria including suitability for MRI imaging of the neck. If you are then happy to take part and meet the eligibility criteria they will book you in for a day that suits you.

Be rewarded!

To help find more participants, the researchers have recently announced a new reward scheme for referrals. To be eligible you must have taken part in the study yourself AND need to recommend someone with neck dystonia who then also takes part. Eligible participants will be given a £50 reward as a thank you for their help spreading the word! There is no limit on the number of referrals you can make.

Learn more!

For the first part of the study, participants are taken for an MRI scan of their head and neck. Before they begin, a radiographer takes the time to explain how the MRI machine works and ensures people have maximum comfort, with blankets and a TV to make you feel totally relaxed. One participant emphasised just how comfortable the MRI scan was, commenting 

“I must admit I was feeling quite anxious on the day particularly as I have never undergone an MRI scan and do experience slight claustrophobia. I cannot praise the radiographer enough. They explained the whole MRI process with clarity and patience and made me feel that I was in safe hands. I thank them unreservedly for their kindness. I was able to take deep breaths and relax whilst listening to the radio during the scan.” 

Once completed, you are shown the images of your brain (not something you see every day!), before being taken to complete an ultrasound. Whilst sat in a chair, a researcher uses a probe and copious amounts of gel to move around your neck, capturing images of the movement of your muscles. Throughout the ultrasound, participants are show the muscle activity on a screen and have plenty of time to ask questions.  

On a sunny Friday in May, our Director of Operations & Development, Victoria, and our Fundraising Officer, Sarika, travelled up to Manchester to visit Professor Ian Loram and his team at MMU where the research is being conducted. The purpose of the visit was to discuss the study’s progress so far and gain an insight into the process participants would be involved in. And what better way for them to find out than to take part in the study themselves! Victoria said:

"Neither Sarika or I have ever taken part in a research study before, but we both left feeling that not only had we contributed in some way to furthering the understanding of dystonia, but that we’d had an enjoyable and interesting time. The study needs more recruits and we hope that by hearing more about our experience, many of you may sign up to take part too."

Take part!

To register your interest, please email your name and contact telephone number to the MMU team using the 'Take Part' button below.

Update May 2025: This study is now closed for recruitment, but keep an eye out on our news page to find out more about other research opportunities in the future!

Published: 29th November 2024