HemoNED is the Dutch Hemophilia Registry for people with hemophilia and associated disorders in the Netherlands. The most important objective of this registry is to improve the quality of care for this group of people.
Organization and collaboration
The Registry is managed by the HemoNED Foundation, a joint initiative of the Dutch Hemophilia Treaters Society (NVHB) and the Netherlands Hemophilia Patient Society (NVHP). The HemoNED Foundation collaborates with several external parties to develop and maintain the registry and the digital infusion log.
Registry and digital infusion log
Hemophilia practitioners enter their patients in the Registry, including the specifics of their disorder, treatment details and outcomes. Patients who receive home treatment record their medication and bleedings in a digital infusion log (app), which is digitally accessible to both patient and practitioner.