FranceCoag Network FRESH-PEF60-en Vanessa MILIEN FranceCoag Network FCN FRESH-PEF60-en 60 FRESH-PEF60 Véronique GOULET SANTE PUBLIQUE FRANCE Epidemiology France Portal (PEF) MINISTERE DU TRAVAIL, DE LA SANTE, DES SOLIDARITES ET DES FAMILLES null haemophilia von Willebrand disease national registry inhibitor hereditary hemorrhagic diseases replacement therapy prophylaxis Hematology Chronic hepatitis C Chronic hepatitis B Human immunodeficiency virus disease without mention of tuberculosis or malaria Von Willebrand disease Environmental determinants: Other Biological determinants: Genetic predisposition Healthcare system determinants: Use of care Environmental determinants Biological determinants Healthcare system determinants Four objectives: 1) Thorough knowledge of the epidemiological characteristics of hereditary haemorrhagic diseases ; 2) To monitor the health of this population; 3) To know the risk factors of inhibitor's development (treatment side effect) and their therapeutic managment; 4) To assess the impact of preventive treatment and contribute to improving the quality of healthcare. null France Individuals Patients population Male Female Infant, Newborn (birth to 28 days) Infant (28 days to 2 years) Child, Preschool (2 to 5 years) Child (6 to 12 years) Young Adult (19 to 24 years) Adult (25 to 44 years) Middle Aged (45 to 64 years) Aged (65 to 79 years) Aged, 80 and over (80 years and more) Patients with: - Hemophilia A or B with factor VIII (FVIII) or factor (FIX) <40%; - Type 1 von Willebrand disease (VWD) with VWF:Ag <30%; Type 2 with a VWF:RCo/VWF:Ag ratio <0.7 or VWF:CB/VWF:Ag <0.7 or FVIII:C/VWF:Ag < 0.5 or positive RIPA; Type 3 with VWF:Ag and VWF:RCo <5%; - Afibrinogenemia (fibrinogen < 0.2 g / l); - a deficiency in factor FII, FV, FVII, FX, FXIII <10%, FXI <20% or FV + FVIII <30%. Clinical data Biological data Paraclinical data (non-biological) : Function testing Coding conventions specific to project. Data monitoring conducted by 3 clinical research associates. Data are checked: - at the coordination centre by automatically processing collected data after recording (missing data outliers and inconsistent data) - in treatment centres against clinical files on 100% of forms: General cohort (on a selection of items); PUPS sub-cohort (all data). Health event/morbidity Health event/mortality Health care consumption and services Others Other Through organizations (health services or institutions schools businesses etc.) [1000-10000[ individuals Converting or copying information into a structured record Observational Study Observational Study Morbidity registry 9,288 patients enrolled on 07/09/2015. Unknown Restricted access Access to operation results on the database through webFC, dedicated RFC computer application (http://www.francecoag.org). Database is accessible to all internal or external researchers interested in the project after submitting a project to 2 experts that is validated by members of the RFC Steering Committee.