The World Bleeding Disorders Registry (WBDR)— a global registry collecting standardized clinical data on people with hemophilia (PWH)—plays a significant part in this process. The International Data Integration Program is part of the WBDR and was developed to make it possible to combine resources from existing hemophilia registries.
Haemophilia—the official journal of the WFH—recently covered how the WBDR International Data Integration Program successfully added data from Thailand into the WBDR. Direct transfer of data of people with haemophilia from the Thai Haemophilia Treatment Centre Registry to the World Bleeding Disorders Registry of the World Federation of Hemophilia shows how the Thai Society of Haematology (TSH) and the WFH combined data from the TSH Hereditary Bleeding Disorders Registry (HBDR) with the WBDR global database, thus eliminating the duplication of data entry.
As a result of this collaboration, the minimum and extended dataset of 300 Thai patients with hemophilia A and B was integrated successfully in the WBDR in 2021. The WFH will continue to collaborate with the TSH under the WBDR International Data Integration Program in the coming years.