Treatment of patients with rare bleeding disorders in the Netherlands: Real‐life data from the RBiN study
Journal of Thrombosis and Haemostasis2022Vol. 20(4), pp. 833–844
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Dominique P.M.S.M. Maas, Joline L. Saes, Nicole M. A. Blijlevens, Marjon H. Cnossen, Paul L. den Exter, Ilmar C. Kruis, Karina Meijer, Laurens Nieuwenhuizen, Marjolein Peters, Roger E. G. Schutgens, Waander L. van Heerde, Saskia E.M. Schols
Abstract
Large heterogeneity in general treatment plans of RBD patients was found. Bleeding after invasive procedures was reported frequently, both before and after RBD diagnosis, irrespective of factor activity levels and particularly when peri-procedural treatment was omitted. Improved guidelines should include uniform recommendations for most appropriate hemostatic products per RBD and emphasize the relevance of individual bleeding history.
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