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

Détails

ID Serval
serval:BIB_3027BB2BFF87
Type
Article: article d'un périodique ou d'un magazine.
Collection
Publications
Institution
Titre
FranceCoag: a 22-year prospective follow-up of the national French cohort of patients with inherited bleeding disorders.
Périodique
European journal of epidemiology
Auteur⸱e⸱s
Doncarli A. (co-premier), Demiguel V. (co-premier), 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.
Collaborateur⸱rice⸱s
FranceCoag Network
Contributeur⸱rice⸱s
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.
ISSN
1573-7284 (Electronic)
ISSN-L
0393-2990
Statut éditorial
Publié
Date de publication
05/2019
Peer-reviewed
Oui
Volume
34
Numéro
5
Pages
521-532
Langue
anglais
Notes
Publication types: Journal Article ; Multicenter Study
Publication Status: ppublish
Résumé
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%).
Mots-clé
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
Pubmed
Web of science
Création de la notice
13/12/2018 16:41
Dernière modification de la notice
31/10/2019 17:09
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