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Disorders Karolinska Hospital","Stockholm","S-17176",{"type":49,"coordinates":438},[439,440],18.06871,59.32938,{"lat":440,"lon":439},[443],{"name":444,"role":35,"phone":10,"phoneExt":10,"email":10},"Susanna Ranta, MD",{"facility":446,"status":56,"city":447,"state":10,"zip":10,"country":448,"cosmosGeoPoint":449,"geoPoint":453,"contacts":454},"Inselspital Bern, University Children's Hospital","Bern","Switzerland",{"type":49,"coordinates":450},[451,452],7.44744,46.94809,{"lat":452,"lon":451},[455],{"name":456,"role":35,"phone":10,"phoneExt":10,"email":10},"Mutlu Kartal-Kaess, MD",{"facility":458,"status":56,"city":459,"state":10,"zip":10,"country":460,"cosmosGeoPoint":461,"geoPoint":465,"contacts":466},"Birmingham Children's Hospital NHS Trust - Department of Haematology","Birmingham","United Kingdom",{"type":49,"coordinates":462},[463,464],-1.89983,52.48142,{"lat":464,"lon":463},[467],{"name":468,"role":35,"phone":10,"phoneExt":10,"email":10},"Jayashree Motwani, MD",{"facility":470,"status":44,"city":471,"state":10,"zip":472,"country":460,"cosmosGeoPoint":473,"geoPoint":477,"contacts":10},"Royal Hospital for Sick Children","Edinburgh","EH9 1LF",{"type":49,"coordinates":474},[475,476],-3.19648,55.95206,{"lat":476,"lon":475},{"facility":479,"status":56,"city":480,"state":10,"zip":481,"country":460,"cosmosGeoPoint":482,"geoPoint":486,"contacts":487},"Department of Haematology Royal Hospital for Sick Children","Glasgow","G 3885",{"type":49,"coordinates":483},[484,485],-4.25763,55.86515,{"lat":485,"lon":484},[488],{"name":489,"role":35,"phone":10,"phoneExt":10,"email":10},"Fernando Pinto, MD",{"facility":491,"status":44,"city":492,"state":10,"zip":493,"country":460,"cosmosGeoPoint":494,"geoPoint":498,"contacts":10},"Haemophila Center Great Ormond Street Hospital for Children","London","WC1N3JH",{"type":49,"coordinates":495},[496,497],-0.12574,51.50853,{"lat":497,"lon":496},{"type":31,"investigatorFullName":500,"investigatorTitle":501,"investigatorAffiliation":5,"oldNameTitle":10,"oldOrganization":10},"Gili Kenet","Director","100284171",false,"NCT02979119","The European Paediatric Network for Haemophilia Management ( PedNet Registry)","The European Paediatric Network for Haemophilia Management and the PedNet Haemophilia Registry","PedNet","Inclusion Criteria:\n\n* Diagnosed with Haemophilia A or B\n* Factor VIII\u002F IX activity of \\\u003C1 to 25%\n* Complete records of Factor treatment and bleeds\n* Treated in one of the participating centres\n\nExclusion Criteria:\n\n* Patients referred because of an inhibitor\\*\n* Informed consent not obtained","ALL",{"count":511,"type":512},4000,"ESTIMATED","18 Years","OBSERVATIONAL","Rationale:\n\nHaemophilia 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.\n\nObjective:\n\nTo collect data on bleeding during neonatal period, endogenous (genetic) and exogenous (treatment-related) determinants of inhibitor development and long term outcome.",[517,518],"Factor VIII Deficiency","Factor IX Deficiency",[520,521,522,523,524,525],"Hemophilia","Children","Inhibitors","Prophylaxis","Long-term outcome","Congenital","2025-09-09",{"date":528,"type":529},"2025-09-16","ACTUAL",{"date":531,"type":10},"2014-06",{"date":533,"type":512},"2039-12",{"name":5,"class":6},39]