Bleeding disorders are conditions in which the blood does not clot properly due to a problem in the blood coagulation process. This may be caused by missing or reduced clotting factors or by platelets that do not function normally. As a result, people can experience frequent or severe bleeding, sometimes even without injury. The most common bleeding disorders are haemophilia A, haemophilia B, and von Willebrand disease. Symptoms can vary widely between people, from mild to severe. Without proper treatment, bleeding can lead to long-term complications, such as joint damage.

For many (rare) bleeding disorders, there is limited data on how many people are affected, how these conditions develop over time, and how treatments perform in daily life. The treatments are commonly effective but often expensive, and new therapies, such as gene therapy, are becoming available. Collecting reliable real-world data from clinical daily practice is therefore essential to improve care, monitor safety, and support informed decision-making.

The Belgian Rare Bleeding Disorders Registry (BRBDR) is a national project that systematically collects data on people with bleeding disorders treated at reference centres in Belgium, recognised by RIZIV-INAMI. Patients are followed over a long period of time, allowing the collection of real-world data on symptoms, treatments, and outcomes. The registry was developed in line with the national convention for haemophilia care with RIZIV-INAMI (2017), which promotes coordinated care and structured national data collection. Sciensano is, under a mandate from RIZIV-INAMI, responsible for managing the registry, including its content, data collection, data analysis and reporting, in collaboration with the reference centres. The BRBDR will also contribute to the Belgian Central Registry of Rare Diseases (CRRD), which brings together information on rare diseases at national level.

The main goal of the BRBDR is to improve knowledge and care for people with bleeding disorders in Belgium. By combining data from all reference centres, the registry helps to:
- understand how many people in Belgium are affected and which disorders they have;
- gain insight into bleeding symptoms and treatment outcomes in real life;
- monitor the safety and effectiveness of treatments (e.g. evaluation of complications and follow-up of coagulation factor consumption);
- compare and improve the quality of care between treatment centres;
- support research and collaboration with international registries and networks;
- provide information for regulatory, reimbursement and public health decisions;
- contribute to national data on rare diseases.

Overall, the BRBDR aims to improve the quality of care for people living with (rare) bleeding disorders and to support health care planning and policy decisions in Belgium.