Haemophilia registry

The PedNet Haemophilia Registry is a collaborative effort of the European PEDiatric NETwork for haemophilia management. The registry was set up in 2004 by PedNet investigators to promote and facilitate research and healthcare development in children with haemophilia. At this moment, 31 Haemophilia Treatment centres (HTCs) from 18 countries are collaborating.

The aim of the PedNet registry is to establish large well-documented birth cohorts of patients with haemophilia enabling studies on side effects and outcome of treatment. Patient data are collected from birth onwards and consist of all data concerning treatment, side effects and outcome of treatment. All newly diagnosed patients with haemophilia A or B with a factor activity until 25%, born from 1-1-2000 and treated in one of the participating centres are eligible for inclusion.

The PedNet Registry is registered on http://ClinicalTrials.gov. ClinicalTrials.gov is a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world. The PedNet Registry is registered under the number NCT02979119

The PedNet Registry is also registered in the European Union electronic Register of Post-Authorisation Studies (PAS) of the European Network of Centres for Pharmacovigilance (ENCePP).


  • The latest number of inclusions and flow chart can be found on the Registry page and in our annual report 2019 (based on data export January 2020).
  • In December 2015, a newsletter for parents and patients was published. This newsletter is available in five languages on the publications page.