Austrian Study Registry for Haemophilia Patients
Duration: 2008 - 2018
Funding: Austrian Haemophilia Society
The Austrian haemophilia registry is a joint initiative among Austrian haemophilia treaters, represented by the Austrian Haemophilia Society’s scientific advisory board, and the Austrian Haemophilia Society (ÖHG). The aim of this registry is to record information on haemophilia, for example, severity of the disease, type of treatment and general health status. The registry consists of three parts: the first part pertains to basic information on quality control; the second part contains extended data for quality control collected annually, and the third, so-called “study part” covers scientific data.
For the latter, written informed consent of each patient is a prerequisite. Data are stored centrally on a server, which is situated in a data processing center with sophisticated security measures including physical access control. Participating institutions are the main haemophilia care centers in Austria. Statistical analysis is carried out on the anonymized data. The project is financed by a Public Private Partnership with financial resources derived from the Austrian Ministry of Health (BMGFJ) and the pharmaceutical industry.