The German Haemophilia Registry
Since December 2004, with financial support by the German Federal Ministry of Health, the Paul-Ehrlich-Institut (PEI) has assumed an important role in creating a German Haemophilia Registry, the "Deutsches Hämophilieregister" (DHR). It is a joint project of the patient organisations DHG and IGH, the scientific society GTH (see below in the sections History and Partners), and the PEI. In February 2007, during the annual conference of the GTH, a collaboration contract for the establishment and operation of the DHR was signed. Two representatives from each of the four parties involved have formed the DHR Steering Committee. The responsibility for establishing the DHR was conferred to the PEI, with the DHR database located and maintained at the PEI.
Since the DHR is going to collect personal health data of patients, special importance must be attached to the protection of the patients' personal rights, and particularly, data security. The PEI therefore consulted the data protection representatives of the Federal Republic of Germany and the Länder (federal states) with the aim of elaborating a data protection concept acceptable to all parties involved. After extensive discussions, a favourable opinion from all data protection representatives was formulated in May 2007. Following this success, the programming could be started. The databank was delivered and accepted by the PEI in February 2008. In the following testing period, the need for indispensable extensions and adaptations was detected and projected. Particularly, the security measures demanded by the data protection representatives necessitated several more months of development before the official online launch of the DHR.
The DHR is a professional, user-friendly database for online input of data. The evaluation of the prospectively accumulating data will be organised by the DHR Steering Committee. Already in early stages, contacts were made with international colleagues in the framework of the International Society on Thrombosis and Haemostasis (ISTH), in order to achieve as far as possible a harmonised database structure, enabling concerted evaluations with other international and regional registries.