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Updated: Jun 29, 2025
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The importance and evolution of bleeding disorder registries
Huyen Tran1,2, Renchi Yang3,4, Kathelijn Fischer5
1The Alfred Hospital, Melbourne, Victoria, Australia.
Summary
Bleeding disorder registries offer valuable data beyond clinical trials, aiding research and improving patient care globally. These registries track natural history, treatments, and outcomes, highlighting disparities and areas for focus in haemophilia management.
Area of Science:
- Hematology
- Public Health
- Clinical Research
Background:
- Randomized clinical trials (RCTs) have limitations in evaluating rare diseases.
- Registries provide real-world data on disease natural history, prevalence, and care models.
- Understanding variations in haemophilia care across different settings is crucial.
Purpose of the Study:
- To highlight the utility of bleeding disorder registries in advancing patient care.
- To showcase diverse registry data sources for haemophilia research.
- To identify differences in haemophilia care and outcomes globally.
Main Methods:
- Review of data from five key bleeding disorder registries.
- Inclusion of country-specific (Australia, China), pediatric (PedNet), surveillance (EUHASS), and demographic (WFH) registries.
- Analysis of data to understand treatment patterns, adverse events, and care models.
Main Results:
- Registries offer insights into natural history, prevalence, and treatment approaches.
- Global and regional registries reveal disparities in haemophilia care and outcomes.
- Data facilitates research, data sharing, and identification of unmet needs.
Conclusions:
- Bleeding disorder registries are essential for comprehensive research and patient care.
- Registry data supports evidence-based practice and policy development in haemophilia.
- Continued use of registry data will advance understanding and management of bleeding disorders.
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