The Swiss Haemophilia Registry-Report From the First 8 Years

Patient registries capture disease related information and provide a valuable source for real-world data on rare diseases and their management. The Swiss Haemophilia Registry (SHR) was established in 2015 on the basis of a new Swiss federal human research act. It includes patients with inherited bleeding disorders, namely haemophilia A and B, von Willebrand disease (VWD), other rare bleeding disorders, and platelet function disorders.

To describe the bleeding disorder landscape in Switzerland.

The SHR is an observational, prospective, longitudinal, multi-centre national registry. Individual patient data is collected annually and includes patient demographics, comorbidities, bleeding events and treatment.

By 2023, 929 patients were included in the SHR, with 60% diagnosed with haemophilia A, 17% with haemophilia B, and 15% with VWD. The cohort was predominantly male (87%), and 75% were adults. Median follow-up was 5.8 years (IQR 3.35-7.22). The prevalence of target joints in 2023 was 2%, with no affected children. Annual inhibitor prevalence in haemophilia patients was 1-2%. The SHR illustrates clearly the transition of prophylaxis products from plasma-derived to extended half-life factor products, and non-factor products, mirroring the global treatment evolution, and trends in individualised and patient-centred haemophilia management.

The SHR provides real-world evidence on haemophilia care in Switzerland and documents major improvements in treatment and patient outcomes over the past decade. Future expansion will be more inclusive of VWD, rare bleeding disorders, and specifically women with bleeding disorders. This will enhance the value of the SHR as a comprehensive national resource.