Rationale of EDRG

Dystonia is being increasingly recognised as a unique disorder in terms of clinical presentation, pathophysiology, and causes. This increasing knowledge is fostering a new era in the research on dystonia and its treatment. Multi-centre controlled clinical trials will study specific cohorts of dystonia patients, recruited on the basis of modern genetic and clinical classification. Both pre-clinical and clinical research on dystonia require convergent efforts to be implemented.

This is the founding rationale for the European Dystonia Research Group, a consortium of scientific investigators from academic and research centres, whose mission is:

• To develop knowledge of dystonia, particularly on its causes, pathophysiology and clinical features
• To co-operative among themselves and with others in the planning of research and clinical activities in the field of dystonia and related disorders, and the implementation, analysis and reporting of controlled clinical trials and other research for dystonia and related disorders.

The EDRG is committed to the principles of open and full scientific communication, peer review, full disclosure of potential conflict of interest, and democratic governance of its organisation and activities. The EDRG is also interested in providing scientific and medical information to professionals and the public and in co-operating with non-governmental organisations and patient support groups that have common or overlapping interests.

There is no other European consortium with similar objectives; therefore the EDRG fills a gap and matches an unmet need. This is particularly true when considering that a similar consortium (the Dystonia Study Group) has been recently established in North America. The EDRG will establish preferential liaisons with the North American group and also with the European section of the Movement Disorders Society, a scientific association covering the broad field of movement disorders. Facilitating and coordinating research on dystonia requires a broad vision aimed in two main directions: vertical integration can be seen as the joining of basic and clinical research, horizontal integration can be achieved in Europe by playing a key role in facilitating communication and exchange between western and eastern European countries. The EDRG can play a pivotal role in both directions.