The European Paediatric Network for Haemophilia Management ( PedNet Registry)
Recruiting now
Conditions studied: Factor VIII Deficiency, Factor IX Deficiency
In brief
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.
Key facts
- Study ID
- NCT02979119
- Run by
- PedNet Haemophilia Research Foundation
- People needed
- 4000
- Starts
- 2014-06-01
- Expected to finish
- 2039-12-01
- Last updated by the study team
- 2025-09-16
Who can join
Age: any. Sex: any. Healthy volunteers: not accepted.
You may qualify if…
- 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
You may not qualify if…
- Patients referred because of an inhibitor*
- Informed consent not obtained
Where it is running
- Department of Pediatrics, Clinic of Coag. Disorders Karolinska Hospital — Stockholm, Sweden (enrolling)
- Inselspital Bern, University Children's Hospital — Bern, Switzerland (enrolling)
- Birmingham Children's Hospital NHS Trust - Department of Haematology — Birmingham, United Kingdom (enrolling)
- Division of Haematology/Oncology Hospital for Sick Children — Toronto, Canada (enrolling)
- Department of Haematology Royal Hospital for Sick Children — Glasgow, United Kingdom (enrolling)
- Haemophilia Comprehensive Care Centre, Centre for Thrombosis and Haemostasis Children's University Hospital Brno — Brno, Czechia (enrolling)
- Department of Paediatric Haematology/oncology - University Hospital Motol — Prague, Czechia (enrolling)
- Department of Pediatrics Århus Kommunehospital Skejby Sygehus — Aarhus, Denmark (enrolling)
- Children's Hospital Helsinki University Hospital — Helsinki, Finland (enrolling)
- Service Hématologique Centre Regional Traitement d'Hemophilie Bicetre — Le Kremlin-Bicêtre, France (enrolling)
- Service d'Hématologie Pédiatrique Hôpital Universitaire La Timone — Marseille Cedex-05, France (enrolling)
- Centre de traitement des hémophiles Hôpital Universitaire Purpan — Toulouse, France (enrolling)
- Charité Campus Virchow Klinikum, Klinik für Pädiatrie m.S. Onkologie und Hämatologie — Berlin, Germany (enrolling)
- Department of Internal Medicine, Hemophilia Treatment Center, Vivantes Klinikum im Friedrichshain — Berlin, Germany (enrolling)
- Institut für Experimentelle Hämatologie und Transfusionsmedizin Universitätsklinikum Bonn — Bonn, Germany (enrolling)
- Klinik Bremen-Mitte Prof.-Hess-Kinderklinik — Bremen, Germany (enrolling)
- Hämophilie Zentrum Rhein Main — Frankfurt, Germany (enrolling)
- University Hospital Frankfurt & Goethe University - Clinical and Molecular Hemostasis, Department of Pediatrics — Frankfurt am Main, Germany (enrolling)
- Dr. v. Haunersches Kinderspital University of Munich — Munich, Germany (enrolling)
- Haemophilia-Haemostasis Unit St. Sophia Children's Hospital — Athens, Greece (enrolling)
- Children's Health Ireland (CHI) at Crumlin — Dublin, Ireland (enrolling)
- The National Hemophilia Center Sheba Medical Center, Tel Hashomer — Ramat Gan, Israel (enrolling)
- Azienda Ospedaliero Universitaria Careggi — Florence, Italy (enrolling)
- Gaslini Hospital — Genova, Italy (enrolling)
- Medical University of Vienna - Department of Paediatrics — Vienna, Austria (enrolling)
Full record on ClinicalTrials.gov
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