The REGISTRY Steering Committee

The REGISTRY Steering Committee has a number of responsibilities, including the selection of study site investigators, monitoring the conduct of the study, fostering recruitment into the study, developing the study protocol, and assisting site investigators.

Central Coordination

REGISTRY is managed directly by the Central Coordination team based at the University of Ulm, Germany. Central Coordination includes the CEO of EHDN, clinical research staff, administrators, and IT specialists.

Language Area Coordination

Language Area Coordination centres are located in the following European countries: Czech Republic, France (covers French-speaking sites in Switzerland and Belgium), Germany (covers Austria and Switzerland), Italy, The Netherlands (covers Belgium and Denmark), Norway (covers Sweden and Finland), Poland, Portugal, Spain, and the United Kingdom (including Ireland). Language Area Coordinators are tasked with obtaining the regulatory approvals for the study and initiating, supporting and monitoring study sites, as well as providing translations.

Working Groups

Working Groups bring together individuals involved with HD to make progress within a specialist area. The Network invites clinical, scientific and lay members to join these working groups in order to facilitate collaborations and novel research.

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