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The European Paediatric Network for Haemophilia Management ( PedNet Registry)
Sponsor: PedNet Haemophilia Research Foundation
Summary
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.
Official title: The European Paediatric Network for Haemophilia Management and the PedNet Haemophilia Registry
Key Details
Gender
All
Age Range
Any - Any
Study Type
OBSERVATIONAL
Enrollment
4000
Start Date
2014-06
Completion Date
2039-12
Last Updated
2025-09-16
Healthy Volunteers
No
Locations (39)
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
Children's Health Ireland (CHI) at Crumlin
Dublin, Ireland
The National Hemophilia Center Sheba Medical Center, Tel Hashomer
Ramat Gan, Israel
Azienda Ospedaliero Universitaria Careggi
Florence, Italy
Gaslini Hospital
Genova, Italy
A. Bianchi Bonomi Hemophilia and Thrombosis Centre IRCCS Ca' Granda Ospedale Maggiore Policlinico
Milan, Italy
Van Creveld Kliniek University Medical Center Utrecht
Utrecht, Netherlands
Oslo University Hospital
Oslo, Norway
Centro Hospitalar São João, S. Imuno-hemoterapia
Porto, Portugal
Unitat Hemofilia Hospital Vall d'Hebron
Barcelona, Spain
Unidad de Coagulopatías Hospital Universitario La Paz
Madrid, Spain
Hospital General Unidad de Hemofilia 1 Sur Hospitales Universitarios Virgen del Rocio
Seville, Spain
Unidad de Coagulopatias Congenitas Hospital Universitario la Fe
Valencia, Spain
Lund University Hospital
Malmo, Sweden
Department of Pediatrics, Clinic of Coag. Disorders Karolinska Hospital
Stockholm, Sweden
Inselspital Bern, University Children's Hospital
Bern, Switzerland
Birmingham Children's Hospital NHS Trust - Department of Haematology
Birmingham, United Kingdom
Royal Hospital for Sick Children
Edinburgh, United Kingdom
Department of Haematology Royal Hospital for Sick Children
Glasgow, United Kingdom
Haemophila Center Great Ormond Street Hospital for Children
London, United Kingdom