[New data from the German Haemophilia Registry]

Area of Science:

• Hematology
• Registry Science

Background:

• The German Haemophilia Registry has collected data since 2009.
• It includes patients with haemophilia A, haemophilia B, and von Willebrand disease.
• Informed consent is required for individual patient data enrollment.

Purpose of the Study:

• To analyze the data collected by the German Haemophilia Registry.
• To assess the completeness of the registry concerning different forms of haemophilia.

Main Methods:

• Online data recording of patients with congenital haemostasis disorders.
• Pseudonymised data enrollment with informed consent.
• Reporting of aggregated data on patient demographics and clotting factor consumption.

Main Results:

• The registry recorded its highest patient numbers in 2010 (3375 for haemophilia A, 614 for haemophilia B) and 2011 (1473 for von Willebrand disease).
• Data includes patient counts by disease type, severity, age, and clotting factor consumption.

Conclusions:

• The German Haemophilia Registry likely captures most severe haemophilia cases.
• Patients with moderate and mild haemophilia appear to be underrepresented in the registry compared to international data.