OBJECTIVES : Hemophilia is a rare, non-curable disease which manifests in a lack of blood clotting factor and mostly affects men. Little is known about the epidemiology of hemophilia in Germany and recent data describing hemophilia patients are scarce. Our aim was to extend the knowledge on hemophilia by consulting real-world data from a large German health claims database.

METHODS : The study was conducted with an age- and sex-representative sample of the InGef research database. We assessed the prevalence, cumulative incidence, demographic and clinical characteristics of hemophilia patients for the year 2017. Patients were identified by the ICD-10-GM code D66 for hemophilia A and D67 for hemophilia B and a prescription of the respective clotting factors in 2017 or 2016.

RESULTS : Approx. 3.5 million insurants were included into the study, from which 127 persons had hemophilia A and 22 persons had hemophilia B. Prevalence of treated hemophilia A was 3.58 cases per 100,000 persons (95%-CI 2.99-4.26) and cumulative incidence (patients of all ages not meeting the case definition in 2016) was 0.34/100,000 (95%-CI 0.17-0.59). Prevalence of hemophilia B was 0.62/100,000 (95%-CI 0.39-0.94). Due to low patient numbers (<5 patients) cumulative incidence of hemophilia B could not be calculated. Mean age of hemophilia A patients was 29±20 years and for hemophilia B 32±20 years. 13.4% of hemophilia A patients were 0-6 years old, 25.2% 7-18 years, 42.5% 19-50 years and 18.9% were ≥50 years old. The most common comorbidities were joint-, pain-, and infection-related diseases, e.g. osteoarthritis, viral hepatitis, or back pain.

CONCLUSIONS : Our results show novel real-world data on hemophilia patients in Germany. Compared to the German Hemophilia Registry, the prevalence was higher. We found that at the time of the study typical comorbidities like pain-, infection-related, and especially joint-disease were still a major concern for hemophilia patients with need for further research and intervention.