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RecruitingNCT02979119

The European Paediatric Network for Haemophilia Management ( PedNet Registry)

The European Paediatric Network for Haemophilia Management and the PedNet Haemophilia Registry

Sponsor

PedNet Haemophilia Research Foundation

Enrollment

4,000 participants

Start Date

Jun 1, 2014

Study Type

OBSERVATIONAL

Conditions

Factor VIII DeficiencyFactor IX Deficiency

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.

Eligibility

Inclusion Criteria4

  • 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 Criteria2

  • Patients referred because of an inhibitor\*
  • Informed consent not obtained
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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

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NCT02979119

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