Registry following children with haemophilia across Europe over time
Collects long-term data on children with haemophilia A or B, including bleeding and treatment effects.
Plain-language title generated from the registry record
Registry title: The European Paediatric Network for Haemophilia Management ( PedNet Registry)
Key facts
- Where
- Berlin, Bonn, Bremen, Frankfurt, Frankfurt am Main, and Munich, GermanySee the 7 sites
Where in Germany
- Charité Campus Virchow Klinikum, Klinik für Pädiatrie m.S. Onkologie und HämatologieBerlin, GermanyTaking people
- Department of Internal Medicine, Hemophilia Treatment Center, Vivantes Klinikum im FriedrichshainBerlin, GermanyTaking people
- Institut für Experimentelle Hämatologie und Transfusionsmedizin Universitätsklinikum BonnBonn, GermanyTaking people
- Klinik Bremen-Mitte Prof.-Hess-KinderklinikBremen, GermanyTaking people
- Hämophilie Zentrum Rhein MainFrankfurt, GermanyTaking people
- University Hospital Frankfurt & Goethe University - Clinical and Molecular Hemostasis, Department of PediatricsFrankfurt am Main, GermanyTaking people
- Dr. v. Haunersches Kinderspital University of MunichMunich, GermanyTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- PedNet Haemophilia Research Foundation
- Trial code
- NCT02979119
- Record updated
- 16 September 2025
- Original description
Rationale:Read full original descriptionShow less
The European Paediatric Network for Haemophilia Management and the PedNet Haemophilia Registry
Rationale:
Haemophilia is a rare disease; to improve knowledge international collaboration is needed. Well-defined clinical data will be collected from complete cohorts in order to prevent selection bias.
Objective:
To collect data on bleeding during neonatal period, endogenous (genetic) and exogenous (treatment-related) determinants of inhibitor development and long term outcome.
Inclusion: Diagnosed with Haemophilia A or B; Factor VIII/ IX activity of <1 to 25%; Complete records of Factor treatment and bleeds; Treated in one of the participating centres.
Exclusion: Patients referred because of an inhibitor*; Informed consent not obtained.