Minimum dataset for the development of the National Haemophilia Registry

Registries record different data according to their purposes. The importance of this work lies in providing a minimum dataset for registering haemophilia patients in Iran, which can help improve the quality of care, facilitate future research and align with international registry systems for bleeding diseases. Therefore, the findings of this study provide a basis for designing, implementing and improving the haemophilia registry system in Iran.Implications for health information management practice:The findings of this study provide a strong foundation for designing and implementing a National Haemophilia Registry in Iran. This system will standardise and integrate data, prevent duplicate records and enhance treatment planning. It will also support epidemiological and clinical research with links to international databases, while improving patient care, follow-up and reducing complications. Overall, it can help align Iran with global standards for managing bleeding disorders.