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


Serval ID
Article: article from journal or magazin.
FranceCoag: a 22-year prospective follow-up of the national French cohort of patients with inherited bleeding disorders.
European journal of epidemiology
Doncarli A. (co-first), Demiguel V. (co-first), Guseva Canu I., Goulet V., Bayart S., Calvez T., Castet S., Dalibard V., Demay Y., Frotscher B., Goudemand J., Lambert T., Milien V., Oudot C., Sannié T., Chambost H.
Working group(s)
FranceCoag Network
Abgraal J.F., Adjaoud D., Albinni S., Ancelet D., Aouba A., Arab B., Ardillon L., Barbay V., Bariller E., Barro C., Bastenaire B., Bayart S., Beaussant-Cohen S., Behar C., Belkaïd I., Benz-Lemoine E., Berger C., Berny K., Bertrand M.A., Beurrier P., Bianchin M., Biernat J., Biron-Andreani C., Blanc M., Bodet L., Borg J.Y., Boulfroy E., Bovet J., Briquel M.E., Brouk Z., Brunot A., Castet S., Chambost H., Chaminade A., Chamouni P., Charbonneau S., Chenuel C., Coatmelec B., Codine P., Collet B., Combe S., Dalibard V., De Lumley L., De Raucourt E., Demay Y., Derlon A., Desprez D., Deville A., Dieval J., d'Oiron R., Donadel Claeyssens S., Donadio D., Douay J., Drugmanne G., Dumesnil C., Dupont de Romemont C., Durin-Assollant A., Dutrillaux F., Falaise C., Faradji A., Ferré E., Ferrer A.M., Feugeas O., Fiks Sigaud M., Fimbel B., Fonlupt J., Fouassier M., Frenzel L., Fressinaud E., Frotscher B., Gaboulaud V., Gaillard S., Gautier P., Gay V., Gembara P., Girault S., Gleizes E., Goesin I., Gorde S., Goudemand J., Gourou K., Grenetier S., Gruel Y., Guérin V., Guérois C., Guezet-Souibri M., Guillet B., Harroche A., Hassenboehler J., Hassoun A., Haya-Baviera G., Henni T., Henrio C., Hézard N., Huguenin Y., Lambert E., Lambert T., Lartigue B., Laurian Y., Lauroua P., Le Cam Duchez V., Leclere A., Le Guyader M., Le Niger C., Le François A., Legrand F., Lienhart A., Li-Thiao-Te V., Lutz P., Macchi L., Maire C., Marichez C., Marie-Cardine A., Marlu R., Marquès-Verdier A., Martin M., Matingou M., Mahi Y., Mercy J., Meunier S., Micheau M., Milien V., Molho P., Monlibert B., Monpoux F., Monmartin A., Moreau P., Munzer M., Navarro R., Négrier C., Nemausat N., Nguyen P., Normand C., Nyombe P., Oudot C., Ounnoughene N., Palamaringue P., Pan Petesch B., Paris C., Parquet A., Paugy P., Pautard B., Pernod G., Pertuiset N., Peter O., Peynet J., Pierre-Louis S., Pignon B., Pincemaille O., Pineau-Vincent F., Play B., Polack B., Pouille Lievin O., Pouymayou K., Pouzol P., Rafowicz A., Ramassamy A., Rauch A., Regina S., Renom P., Reynaud J., Ricard C., Risch J., Robert V., Roche M., Rosay A., Rospide P., Rothschild C., Rousseau F., Rugeri L., Sanderson F., Savary I., Schneider P., Schved J.F., Selva J., Sénéchal P., Sicardi F., Sie P., Soler C., Stieltjes N., Stoven C., Sultan Y., Susen S., Tahiri C., Tamburro M., Tardy B., Tarral E., Ternisien C., Thiercelin Legrand M.F., Thouvenin-Doulet S., Tintillier V., Torchet M.F., Trillot N., Tron P., Trossaërt M., Uettwiller F., Valentin J.B., Vanderbecken S., Vannier J.P., Vassilieff D., Vicariot M., Voisin S., Volot F., Voyer A., Wibaut B.
1573-7284 (Electronic)
Publication state
Issued date
Publication types: Journal Article ; Multicenter Study
Publication Status: ppublish
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., < 18 years old) with severe haemophilia and comprehensive information available since the first exposure to treatment was identified as the PUPs (Previously Untreated Patients) cohort. Data for the 643 children included in the PUPs' cohort had been collected since their birth. Follow-up data were collected by the clinicians in haemophilia treatment centres (HTC) every 12.9 months on median (IQR 11.4-21.3). In the PUPS cohort, data were updated every 6.2 months on median (IQR 3.7-11.7). A unique patient number assigned at study inclusion was kept at individual HTC by participating clinicians. The data collected included demographic, clinical, therapeutic and biological items on standard electronic forms. As of December 30th 2016, a plasma and serum samples was available for 2581 patients (27.1%).
Adolescent, Adult, Blood Coagulation Disorders, Inherited/epidemiology, Coagulation Protein Disorders/epidemiology, Female, Follow-Up Studies, France/epidemiology, Hemophilia A/epidemiology, Hemophilia B/epidemiology, Humans, Male, Middle Aged, Prospective Studies, Young Adult, von Willebrand Diseases/epidemiology, Haemophilia, Inhibitor, Prophylaxis, Rare inherited disease, Risk factor
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Create date
13/12/2018 16:41
Last modification date
31/10/2019 17:09
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