You can get involved in the global dystonia research effort by joining the Global Dystonia Registry. This is an international database of patients, which can be used by scientists and researchers. In the first 2 years, more than 3000 people have already signed up and it has been used develop a number of research papers. The registry is run by the Dystonia Coalition, an international partnership between patient groups and dystonia treatment centres – so far 17 patients groups and 46 treatment centres are involved.
In one recent study, researchers looked at the relation between dystonic tremor and dystonia symptoms. They found that in patients with neck dystonia who also had tremor, the tremor and the dystonia symptoms were located together but for cranial dystonia the tremor was usually located away from the other dystonia symptoms. There is limited understanding of the relation between tremor and dystonia so the result provides a useful basis for further work.
Because of the rarity of many types and sub-types of dystonia, it is vital that as many cases as possible are registered in a single international database. This will enable researchers to collect together enough people with similar conditions to run meaningful trials.
So if you haven’t already done so, it is well worth considering joining up.
It’s a self-reporting registry, which means filling out a very simple questionnaire about you and your dystonia. To register, click here.