On December 16th 2016 the PedNet Haemophilia Research Foundation was established. The foundation serves as legal body for the PedNet Registry and the PedNet group.
Mission of the PedNet Haemophilia Research Foundation
To improve the current and future care of children with haemophilia by collection of high-quality data from a large cohort of unselected previously untreated children with haemophilia A and B, thus enabling front-line research projects on inhibitor development, safety, efficacy and long-term outcome of replacement and non-replacement therapies.
The objectives of the foundation are to:
- promote scientific research relating to haemophilia and allied disorders;
- promote international cooperation between centres specialising in treating children with – haemophilia;
- gain insight into all the factors influencing the course of the illness, including treatment with clotting products and the effect of treatments;
- present and publish the results of scientific research;
- investigate the safety and effectiveness of replacement and non-replacement therapies;
The foundation is a non-for-profit organisation.
The foundation is the legal entity responsible for the protocol of the PedNet Haemophilia Registry.