Research policy
Making the data from the registry available for reports, scientific research and safety studies for (new) medication is one of the objectives of HemoNED. This way, we can guarantee the evaluation, comparison and improvement of the quality of care for people with hemophilia and associated bleeding disorders. The information will always be anonymized and aggregated and will never contain personal information of individual patients!
The data from the registry is primarily used by the HemoNED Foundation and the Steering Committee for drawing up annual reports and benchmark reports, the reporting of side effects of medication to national (Lareb) and international (EUHASS) organizations, and the provision of information to international patient associations.
In addition, both national and international groups can apply for information from the registry.