Why Register?

To characterize and describe the DYT-1 Dystonia affected population as a whole worldwide, helping to understand the causes and treatments of this condition.

To create an extended collection of all family members of people with the DYT-1 Dystonia gene.

Since there may be a connection between people with other Dystonias, this registry will also encompass any individual who has tested positive for any of the other Dystonia genes (i.e. DYT-6).

To enhance the understanding of the variability, progression, and natural history of DYT-1 Dystonia. To assist the Dystonia medical community and serve as a resource for investigators seeking individuals with Dystonia to participate in clinical trials.

Little is known about very basic aspects of DYT-1 Dystonia. Why only some of the people with DYT-1 develop symptoms and others don't? Is the frequency of this condition higher in certain communities, and is it changing over time? Are people developing symptoms at younger ages now than in the past?

A registry is the most accurate way to determine the number of people who carry the DYT-1 gene and those that develop symptoms and to identify trends in Dystonia rates in the population. For example, a registry can determine whether the number of people with Dystonia, or with childhood onset Dystonia, is increasing.

A registry will provide a systematic way to link Dystonia to chemical toxins and other environmental risk factors, by linking with environmental health databases in the state. Thus a registry could make a dramatic contribution to finding the causes of Dystonia symptomolgy.

Identification of factors causing Dystonia symptomology is the first step toward prevention.