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This is a Literature Review study.

Overview on Rare Congenital Bleeding Disorders and Epidemiological Data from the German Haemophilia Registry (DHR) and a Survey in Germany, Austria, and Switzerland

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Narrative review unveils treatment patterns and thrombotic risks in rare bleeding disorders, indicating significant gaps in current data.

RBDs show a diverse clinical phenotype, and treatment gaps remain significant for severe cases in adults and children.
Survey data from 34 centers revealed FVII deficiency as the most common RBD, while FII deficiency was the rarest in the GTH region.
Preferred treatment involves single factor concentrates, but prophylactic treatment rates were only about 30% for severe FV deficiency cases.
Further data from the DHR could enhance understanding of treatment approaches for RBDs, emphasizing the challenges in clinical trials.

Holstein et al. (2025) studied this question.

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