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

Key Messages

• 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.