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  • Taking part in research
  1. About us
  2. Research
  3. Taking part in research

Taking part in research

Together, we are committed to increasing the number of dystonia research studies, improving outcomes, and growing the involvement of people living with dystonia. Research has the power to change lives - and while there is currently no cure, we believe that sustained support and collaboration will move us closer to that day.

Everyone can play a part in supporting dystonia research. By staying informed, sharing your experiences, or taking part in studies, you help researchers gain the insights they need to drive progress. Our Research Network brings together people who want to stay connected with developments in the field and hear about opportunities to get involved.

By signing up, you’ll receive regular research roundups, updates from the research community, and invitations to take part in studies when opportunities arise.

You can:
• Learn more about dystonia research and connect with the scientists behind it
• Share your views on what research is needed and how it is carried out
• Take part in clinical studies and trials

Research studies come in many forms. Some simply involve sharing your experiences through interviews or surveys, while others may involve meeting medical professionals, joining focus groups, or taking part in structured clinical research. Every contribution, big or small, is valuable.

Sign up to the Dystonia UK Research Network today and be part of shaping the tomorrow of dystonia research.

Global Dystonia Registry

Global Dystonia Registry

For anyone who has a form of dystonia or is related by blood to someone who does. Read more

Published: 17th June, 2021

Updated: 4th December, 2025

Author: Bernie McMahon

Research news

Research news

Explore the latest dystonia research news, projects, and findings shaping understanding, treatment, and future care. Read more

Published: 3rd December, 2025

Updated: 4th December, 2025

Author: Victoria Wareham

Taking part example

Taking part example

Read a real world example from our Director of Operations and Development as they describe taking part in a recent research study. Read more

Published: 4th December, 2025

Author: Victoria Wareham

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  • What is dystonia?

    What is dystonia?

    Dystonia is a neurological condition that is estimated to affect at least 100,000 people in the UK. Learn more about it here.

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  • What causes dystonia?

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    The cause of dystonia is not yet fully understood, in some cases at least it can be attributed to a chemical imbalance in the part of the brain called the basal ganglia, a part which helps to control movement.

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Dystonia UK is the operating name of The Dystonia Society. The Dystonia Society is registered as a charity in England and Wales (1062595) and in Scotland (SC042127)

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