The PedNet Haemophilia Registry is a collaborative effort of the European PEDiatric NETwork for haemophilia management. The registry is 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 (HTC ‘s) 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) http://www.encepp.eu studies/indexRegister.shtml of the European Network of Centres for Pharmacovigilance (ENCePP).