RECRUITINGOBSERVATIONAL
The European Paediatric Network for Haemophilia Management ( PedNet Registry)
The European Paediatric Network for Haemophilia Management and the PedNet Haemophilia Registry
About This Trial
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.
Who May Be Eligible (Plain English)
Who May Qualify:
- 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
Who Should NOT Join This Trial:
- Patients referred because of an inhibitor\*
- willing to sign a consent form not obtained
Always talk to your doctor about whether this trial is right for you.
Original Eligibility Criteria
View original clinical language
Inclusion Criteria:
* 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 Criteria:
* Patients referred because of an inhibitor\*
* Informed consent not obtained
Locations (20)
Universitäts-Klinik für Kinder- und Jugendheilkunde
Graz, Austria
Medical University of Vienna - Department of Paediatrics
Vienna, Austria
Service of Pediatric Haematology University Hospital Leuven
Leuven, Belgium
Division of Hematology/Oncology Hôpital St Justine
Montreal, Canada
Division of Haematology/Oncology Hospital for Sick Children
Toronto, Canada
Haemophilia Comprehensive Care Centre, Centre for Thrombosis and Haemostasis Children's University Hospital Brno
Brno, Czechia
Department of Paediatric Haematology/oncology - University Hospital Motol
Prague, Czechia
Department of Pediatrics Århus Kommunehospital Skejby Sygehus
Aarhus, Denmark
Children's Hospital Helsinki University Hospital
Helsinki, Finland
Service Hématologique Centre Regional Traitement d'Hemophilie Bicetre
Le Kremlin-Bicêtre, France
Service d'Hématologie Pédiatrique Hôpital Universitaire La Timone
Marseille Cedex-05, France
Centre de traitement des hémophiles Hôpital Universitaire Purpan
Toulouse, France
Charité Campus Virchow Klinikum, Klinik für Pädiatrie m.S. Onkologie und Hämatologie
Berlin, Germany
Department of Internal Medicine, Hemophilia Treatment Center, Vivantes Klinikum im Friedrichshain
Berlin, Germany
Institut für Experimentelle Hämatologie und Transfusionsmedizin Universitätsklinikum Bonn
Bonn, Germany
Klinik Bremen-Mitte Prof.-Hess-Kinderklinik
Bremen, Germany
Hämophilie Zentrum Rhein Main
Frankfurt, Germany
University Hospital Frankfurt & Goethe University - Clinical and Molecular Hemostasis, Department of Pediatrics
Frankfurt am Main, Germany
Dr. v. Haunersches Kinderspital University of Munich
Munich, Germany
Haemophilia-Haemostasis Unit St. Sophia Children's Hospital
Athens, Greece