National Quality Registry for Haemophilia
Registry category: Rare diseases
Certification level: 3
Central personal data controller (CPUA): Karolinska Universitetssjukhuset
Hemophilia is a genetic disorder of the mechanism of blood clotting. These diseases are usually hereditary and the most common are haemophilia A, B and von Willebrand disease. The purpose of the quality registry is to ensure good follow-up of this small group of patients who receive costly treatment. The most important data in the assessment of treatment are the incidence of bleeding per year, and joint injuries, which are caused by previous bleeding in the joints. These are functionally measured with the Haemophilia Joint Health Score, which is a physical examination performed by a physiotherapist.
Note: Variable lists are updated on a regular basis and should therefore be seen as preliminary. For the latest version, please contact the registry.
Find contact information on the registry’s website.