Real-world bleeding rates on emicizumab: the value of using nationwide digital treatment diary data in clinical research
Bleeding rates among Dutch people with severe hemophilia A using emicizumab were comparable to other real-world studies. We formulated recommendations to improve the quality of patient-reported bleeding data, such as establishing guidelines for recording bleeds and improving interoperability.
Authors
- M.H.E. Driessens (ORCID: https://orcid.org/0000-0001-7423-8538)
- M. Beijlevelt
- Paul L. den Exter (ORCID: https://orcid.org/0000-0002-1543-5731)
- Elisabeth M. Taal
- Martijn R Brands (ORCID: https://orcid.org/0000-0002-3188-5900)
- Marjet A Stein-Wit
- Marieke J. H. A. Kruip (ORCID: https://orcid.org/0000-0002-0265-4871)
- Kathelijn Fischer (ORCID: https://orcid.org/0000-0001-7126-6613)
- Samantha C. Gouw (ORCID: https://orcid.org/0000-0002-1957-4122)
- Karina Meijer (ORCID: https://orcid.org/0000-0001-9447-0465)
- Stephan Meijer (ORCID: https://orcid.org/0000-0003-4003-3547)
- Karin Fijnvandraat (ORCID: https://orcid.org/0000-0003-0904-4360)
- Britta A. P. Laros‐van Gorkom
- Martijn Oude Voshaar
- Caroline M E van Veen
Institutions
- University Medical Center Groningen (NL)
- Radboud University Nijmegen (NL)
- University of Groningen (NL)
- Utrecht University (NL)
- Dutch Cancer Society (NL)
- Leiden University Medical Center (NL)
- Erasmus MC (NL)
- Radboud University Medical Center (NL)
- University Medical Center Utrecht (NL)
- Sanquin (NL)
- Amsterdam Neuroscience (NL)
- Amsterdam University Medical Centers (NL)
- Hersenstichting (NL)
- University of Amsterdam (NL)
Publication Details
- Journal
- Research and Practice in Thrombosis and Haemostasis
- Published
- 2025-02-01
- DOI
- https://doi.org/10.1016/j.rpth.2025.102717
- Citations
- 5
- Primary Topic
- Hemophilia Treatment and Research
- Type
- article
- Field-Weighted Citation Impact
- 8.85
Funders
- Pfizer
- CSL Behring
- Nederlandse Organisatie voor Wetenschappelijk Onderzoek
- Novo Nordisk
- Swedish Orphan Biovitrum
- Aard- en Levenswetenschappen, Nederlandse Organisatie voor Wetenschappelijk Onderzoek