Reflections on the Canadian Bleeding Disorders Registry: Lessons Learned and Future Perspectives

Abstract

The Canadian Bleeding Disorders Registry (CBDR) has become the national registry for comprehensive care and research in hemophilia in Canada with patient, clinical, and research module connectivity. The CBDR has served as a robust resource to inform epidemiology of disease, burden of disease, and disease changes and variation over time as new treatment modalities are introduced. Information on the utilization of blood products to treat hemophilia has and can be retrieved and used by Canadian blood product procurement agencies to inform decision-making for past and future purchases. The successful multistakeholder coordination and alignment achieved over decades with the development and function of the CBDR is an exemplar that could be extended to other rare disease areas.