Direct data transfer of people with hereditary bleeding disorders from the Thai haemophilia treatment centre registry to the Annual Global Survey of the World Federation of Hemophilia.

This article discusses the transfer of data from the Thai haemophilia treatment center registry to the Annual Global Survey (AGS) of the World Federation of Hemophilia (WFH). The data collection aims to improve care for patients with hereditary bleeding disorders by identifying available treatment resources, evaluating their effectiveness, and advocating for better care. The Thai Society of Haematology (TSH) initiated the Haemostasis Registry, which includes the Hereditary Bleeding Disorders Registry (HBDR) and Thrombosis. The data from the HBDR is transferred to the World Bleeding Disorders Registry (WBDR) and the AGS of the WFH. This data transfer reduces redundancy and improves the reliability, accuracy, cost-effectiveness, and efficiency of data collection. The article highlights the importance of the AGS in collecting data on patients with hereditary bleeding disorders and the treatments used worldwide. The data collected through the AGS is used for resource planning, advocacy, research, and development activities to improve the management of patients with these disorders. The authors emphasize the need for collaboration between clinicians and information technology personnel to ensure accurate data input and output. The dataset of the World Bleeding Disorders Registry and the questionnaire of the AGS are recommended as useful templates for data collection and reporting. The study was conducted ethically and the data is available upon request. [Extracted from the article]