The European Paediatric Network for Haemophilia Management and the PedNet Haemophilia Registry
Status: Recruiting
Location: See all (37) locations...
Study Type: Observational
SUMMARY
Objective: To collect data on bleeding during neonatal period, endogenous (genetic) and exogenous (treatment-related) determinants of inhibitor development and long term outcome.
Eligibility
Participation Requirements
Sex: All
Healthy Volunteers: f
View:
• 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
Locations
Other Locations
Austria
Universitäts-Klinik für Kinder- und Jugendheilkunde
COMPLETED
Graz
Medical University of Vienna - Department of Paediatrics
RECRUITING
Vienna
Belgium
Service of Pediatric Haematology University Hospital Leuven
RECRUITING
Leuven
Canada
Division of Hematology/Oncology Hôpital St Justine
RECRUITING
Montreal
Division of Haematology/Oncology Hospital for Sick Children
RECRUITING
Toronto
Denmark
Department of Pediatrics Århus Kommunehospital Skejby Sygehus
RECRUITING
Aarhus
Finland
Children's Hospital Helsinki University Hospital
RECRUITING
Helsinki
France
Service Hématologique Centre Regional Traitement d'Hemophilie Bicetre
RECRUITING
Le Kremlin-bicêtre
Service d'Hématologie Pédiatrique Hôpital Universitaire La Timone
RECRUITING
Marseille Cedex-05
Centre de traitement des hémophiles Hôpital Universitaire Purpan
RECRUITING
Toulouse
Germany
Charité Campus Virchow Klinikum, Klinik für Pädiatrie m.S. Onkologie und Hämatologie
RECRUITING
Berlin
Department of Internal Medicine, Hemophilia Treatment Center, Vivantes Klinikum im Friedrichshain
RECRUITING
Berlin
Institut für Experimentelle Hämatologie und Transfusionsmedizin Universitätsklinikum Bonn
RECRUITING
Bonn
Klinik Bremen-Mitte Prof.-Hess-Kinderklinik
RECRUITING
Bremen
Hämophilie Zentrum Rhein Main
RECRUITING
Frankfurt
University Hospital Frankfurt & Goethe University - Clinical and Molecular Hemostasis, Department of Pediatrics
RECRUITING
Frankfurt Am Main
Dr. v. Haunersches Kinderspital University of Munich
RECRUITING
Munich
Greece
Haemophilia-Haemostasis Unit St. Sophia Children's Hospital
RECRUITING
Athens
Ireland
Children's Health Ireland (CHI) at Crumlin
RECRUITING
Dublin
Israel
The National Hemophilia Center Sheba Medical Center, Tel Hashomer
RECRUITING
Ramat Gan
Italy
Azienda Ospedaliero Universitaria Careggi
RECRUITING
Florence
Gaslini Hospital
RECRUITING
Genova
A. Bianchi Bonomi Hemophilia and Thrombosis Centre IRCCS Ca' Granda Ospedale Maggiore Policlinico
COMPLETED
Milan
Netherlands
Van Creveld Kliniek University Medical Center Utrecht
RECRUITING
Utrecht
Norway
Oslo University Hospital
NOT_YET_RECRUITING
Oslo
Portugal
Centro Hospitalar São João, S. Imuno-hemoterapia
RECRUITING
Porto
Spain
Unitat Hemofilia Hospital Vall d'Hebron
RECRUITING
Barcelona
Unidad de Coagulopatías Hospital Universitario La Paz
RECRUITING
Madrid
Hospital General Unidad de Hemofilia 1 Sur Hospitales Universitarios Virgen del Rocio
COMPLETED
Seville
Unidad de Coagulopatias Congenitas Hospital Universitario la Fe
RECRUITING
Valencia
Sweden
Lund University Hospital
RECRUITING
Malmo
Department of Pediatrics, Clinic of Coag. Disorders Karolinska Hospital
RECRUITING
Stockholm
Switzerland
Inselspital Bern, University Children's Hospital
RECRUITING
Bern
United Kingdom
Birmingham Children's Hospital NHS Trust - Department of Haematology
RECRUITING
Birmingham
Royal Hospital for Sick Children
COMPLETED
Edinburgh
Department of Haematology Royal Hospital for Sick Children
RECRUITING
Glasgow
Haemophila Center Great Ormond Street Hospital for Children
COMPLETED
London
Contact Information
Primary
Angelique Hermeling
a.hermeling@pednet.eu
+31850299993
Backup
Hermeling
info@pednet.eu
Time Frame
Start Date: 2014-06
Estimated Completion Date: 2039-12
Participants
Target number of participants: 4000
Treatments
Cohort I
Children with mild ( FVIII/IX 6 to 25%), moderate (FVIII/IX 1 to 5%) or severe (FVIII/IX \<1%) haemophilia A or B, born from January 1st 2000 until December 31st 2009 who have been or are to be treated with coagulation proteins in one of the participating centres
Cohort II
Children with mild ( FVIII/IX 6 to 25%), moderate (FVIII/IX 1 to 5%) or severe (FVIII/IX \<1%) haemophilia A or B, born from January 1st 2010 until December 31st 2019 who have been or are to be treated with coagulation proteins in one of the participating centres
Cohort III
Children with mild ( FVIII/IX 6 to 25%), moderate (FVIII/IX 1 to 5%) or severe (FVIII/IX \<1%) haemophilia A or B, born from January 1st 2020 until December 31st 2029 who have been or are to be treated with coagulation proteins in one of the participating centres
Cohort IV
Cohort IV Group/Cohort Description: Children with mild ( FVIII/IX 6 to 25%), moderate (FVIII/IX 1 to 5%) or severe (FVIII/IX \<1%) haemophilia A or B, born from January 1st 2030 until December 31st 2039 who have been or are to be treated with coagulation proteins in one of the participating centres
Authors
Related Therapeutic Areas
Sponsors
Leads: PedNet Haemophilia Research Foundation