Why a registry?
Hemophilia is a congenital anomaly in the body's ability to form blood clots, which can result in bleedings in joints, muscles and organs. In addition to hemophilia there are other bleeding disorders, of which the Von Willebrand disease is the most common form. It concerns rare disorders with an effective but expensive treatment. The total amount of people with a bleeding disorder in the Netherlands is unknown. We also don't know sufficiently about their use of coagulation factors, the cost effectiveness and the results of different treatments. Side effects of treatments are being recorded, but with this registry it is possible to compare them per product or patient group. Therefore, a national patient registry is a vital means to identify and list the treatments, keep track of the side effects, evaluate results and improve the treatment. Many European countries already have a national hemophilia registry, which also enables a comparison of hemophilia care between different countries. A national hemophilia registry is one of the recommendations of the European Principles of Haemophilia Care (2008). This recommendation was adopted by The Netherlands as part of the process for harmonisation of quality standards in hemophilia care.
What is the objective of the registry?
The most important objective of this registry is to improve the quality of care for people with hemophilia and associated disorders. This can be achieved by continuously recording, compiling and comparing information about their disease, treatment and treatment results. A continuous (longitudinal) follow up is indispensable. Detailed information about the patients' infusions and bleedings are recorded in a digital infusion log by patients who receive home treatment. The information from the digital infusion log is sent to the registry. Hemophilia practitioners can conveniently access this information on their own patients and discuss it during consultation visits.
After anonymization the registry data can be used for different purposes:
- Giving insight into the total number of people in the Netherlands with bleeding disorders, their diagnosis, the use of coagulation factors, bleedings, treatment results and side effects of the treatment.
- Comparing the quality of care (benchmarking) of hemophilia treatment centres in the Netherlands and abroad.
- Reporting side effects of medication to the Netherlands Pharmacovigilance centre (Lareb) and the European Haemophilia Safety Surveillance database (EUHASS).
- Providing information for reports, scientific research and safety studies for (new) medications.