A major new development in research into dystonia, The Global Dystonia Registry, is now up and running. This is an international database of patients, which can be used by scientists and researchers, and could lead to clinical and research trials.
It’s been set up by the Dystonia Coalition in collaboration with patient organisations. At the moment it’s dominated by American groups, but there are doctors and scientists involved world wide, including several from the UK. It’s open to anyone, and we in the UK Dystonia Society are delighted to be a part of it.
It’s a self-reporting registry, which means filling out a very simple questionnaire about you and your dystonia. To register, click here.
“This is a fantastic opportunity for the dystonia community world-wide.” That’s the view of Dr H Jinnah, eminent neurologist at Emory University in Atlanta, and one of the key figures in the Dystonia Coalition. He’s convinced that collecting all this data will be invaluable in promoting better communication between those affected by dystonia and researchers who’re trying to learn more about it.
Although dystonia can take many different forms, most experts believe there could be a common cause. It might be a similar gene defect, or similar lifetime experiences – or both. Collecting information from as wide a range of people as possible may help identify the common features, and the more that’s understood, the nearer we get to a cure.
So what are you waiting for? Click here, read the instructions, and join the global registry. By doing this you are becoming part of the international dystonia community. Your information could help the scientists, and ultimately other people affected by dystonia.
