Help shape the future of dystonia research.

You can get involved in the global dystonia research effort by joining The Global Dystonia Registry (GDR). This is an international database of patients which can be used by scientists and researchers.

In the first two years, more than 3000 people signed up and it has been used to develop a number of research papers. The registry is run by the Dystonia Coalition, an international partnership between patient groups and dystonia treatment centres, of which Dystonia UK is one.

The Global Dystonia Registry logo

The goal of the GDR is to support future dystonia studies, including clinical and research trials, through the collection of data about people living with dystonia. Your responses can help researchers better understand the dystonia experience and help guide future directions in research.

Who can take part?

Anyone who has a form of dystonia or is related by blood to someone who does.

How long will it take?

It is a self-reporting registry so the time it takes will depend on your individual circumstances.

You will be asked to:

  • create an online account
  • complete a profile with information about your dystonia, treatments you have had and how dystonia has affected you and/or your family
  • occasionally update your profile as information about you changes