[The German haemophilia register]

Since December 2004, the Paul-Ehrlich-Institut (PEI) has stepped up its efforts to develop the Deutsche Hämophilieregister (DHR, German Haemophilia Register). In February 2007, during the annual conference of the GTH, the collaboration contract for the establishment and operation of the German Haemophilia Register was signed as a joint project of the patient organisations DHG and IGH, the GTH, and the PEI. The parties involved conferred the responsibility for establishing the German Haemophilia Register to the PEI. They also decided that the German Haemophilia Register should be located at the PEI. Two representatives from each of the four parties involved formed as the steering committee. Since the DHR will collect personal health data, special importance must be attached to the protection of the patients' personal rights and data security. The PEI contacted the data protection representative of the Federal Republic of Germany and the federal states with the aim of a data protection concept acceptable to all parties involved. A favourable opinion from all data protection representatives was formulated in May 2007 so thus programming the database was accepted in February 2008. In the following testing period enlargements and adaptations were detected and projected. The security measures demanded by the data protection representatives will delay the official launching of the German Haemophilia Register as online register for some months.