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FranceCoag: a 22-year prospective follow-up of the national French cohort of patients with inherited bleeding disorders

Authors :
Alexandra, Doncarli
Virginie, Demiguel
Irina, Guseva Canu
Véronique, Goulet
Sophie, Bayart
Thierry, Calvez
Sabine, Castet
Vincent, Dalibard
Yohan, Demay
Birgit, Frotscher
Jenny, Goudemand
Thierry, Lambert
Vanessa, Milien
Caroline, Oudot
Thomas, Sannié
Hervé, Chambost
B, Wibaut
Laboratoire d'épidémiologie (IRSN)
Institut de Radioprotection et de Sûreté Nucléaire (IRSN)
Infectious Disease Department [Saint Maurice]
Agence Nationale de la Santé Publique [Saint-Maurice] (ANSP)
Hématogoie pédiatrique
hôpital Sud
Institut Pierre Louis d'Epidémiologie et de Santé Publique (iPLESP)
Université Pierre et Marie Curie - Paris 6 (UPMC)-Institut National de la Santé et de la Recherche Médicale (INSERM)
Service d’Hématologie Clinique [CHRU Nancy]
Centre Hospitalier Régional Universitaire de Nancy (CHRU Nancy)
Hôpital cardiologique
Université de Lille, Droit et Santé-Centre Hospitalier Régional Universitaire [Lille] (CHRU Lille)
Centre d'Etudes Fiscales et Financières (CEFF)
Aix Marseille Université (AMU)
Service de Pédiatrie médicale - Spécialités médicales [CHU Limoges]
CHU Limoges
Association française des hémophiles (AFH)
Centre recherche en CardioVasculaire et Nutrition = Center for CardioVascular and Nutrition research (C2VN)
Aix Marseille Université (AMU)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Institut National de Recherche pour l’Agriculture, l’Alimentation et l’Environnement (INRAE)
Hôpital de la Timone [CHU - APHM] (TIMONE)
Service de pédiatrie, d'hématologie et d'oncologie [Hôpital de La Timone - APHM]
Assistance Publique - Hôpitaux de Marseille (APHM)- Hôpital de la Timone [CHU - APHM] (TIMONE)
Santé publique France Guyane
Santé publique France - French National Public Health Agency [Saint-Maurice, France]
Institute for Work and Health (IST)
Lausanne
Source :
European Journal of Epidemiology, European Journal of Epidemiology, Springer Verlag, 2019, 34 (5), pp.521-532. ⟨10.1007/s10654-018-0468-7⟩, European Journal of Epidemiology, 2019, 34 (5), pp.521-532. ⟨10.1007/s10654-018-0468-7⟩
Publication Year :
2018
Publisher :
Springer Science and Business Media LLC, 2018.

Abstract

International audience; FranceCoag is an ongoing open prospective multicentre cohort project aimed at improving epidemiological knowledge about inherited bleeding disorders in France. The main objective of this article was to evaluate the project's progress as of the 30th December 2016. Between 1994 and this date, of the 10,047 patients included in the study, 384 (3.8%) were reported by clinicians to have died and 159 (1.6%) to be lost to follow-up. Among the remaining 9504 patients still being followed up, 5748 (60.5%) had haemophilia A, 1300 (13.7%) haemophilia B, 1980 (20.8%) von Willebrand Disease while 476 (5.0%) had another clotting factor deficiency (Factor I, II, V, combined V and VIII, VII, X, XI and XIII). The median age of the population was 32 years (Inter-quartile range (IQR) 18-50 years) at data extraction on December 30th, 2016. The subgroup of children (i.e.

Details

ISSN :
15737284 and 03932990
Volume :
34
Database :
OpenAIRE
Journal :
European Journal of Epidemiology
Accession number :
edsair.doi.dedup.....f4d0a6114d134538f626dcd8329fee87