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 32 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 and B until 25% from 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
- Number of inclusions is steadily increasing. The latest numbers and flow chart can be found on the Registry page and in our annual report (based on data export January 2018).