{"id":567,"date":"2023-12-20T17:52:19","date_gmt":"2023-12-20T16:52:19","guid":{"rendered":"https:\/\/www.francecoag.org\/presentation-of-france-coag\/project-francecoag\/data-collection-and-questionnaires\/"},"modified":"2026-10-25T15:27:32","modified_gmt":"2026-10-25T14:27:32","slug":"data-collection-and-questionnaires","status":"publish","type":"page","link":"https:\/\/www.francecoag.org\/en\/project-francecoag\/data-collection-and-questionnaires\/","title":{"rendered":"Data collected and questionnaires"},"content":{"rendered":"<p>Data collected in FranceCoag are grouped into seven main questionnaires.<\/p>\n<h2>1. Patient identification<\/h2>\n<p>Surname, first names, French social security number (NIR), contact details.<\/p>\n<h2>2. General characteristics<\/h2>\n<ul>\n<li>diagnosis of the inherited bleeding disorder (type of deficiency and severity, as defined by the ISTH recommendations<a href=\"#ref1\" id=\"ref1-texte\"><sup>1<\/sup><\/a>);<\/li>\n<li>demographic characteristics;<\/li>\n<li>family history;<\/li>\n<li>records of objection or non-objection to data processing;<\/li>\n<li>genetic data.<\/li>\n<\/ul>\n<h2>3. FranceCoag visits<\/h2>\n<p>Dates and type of FranceCoag visits.<\/p>\n<h2>4. Comorbidities and events<\/h2>\n<ul>\n<li>comorbidities and Charlson comorbidity index;<\/li>\n<li>joint events: haemarthroses and their treatment, target joints, annualised joint bleeding rate (AJBR), Haemophilia Joint Health Score (HJHS);<\/li>\n<li>bleeding events: severe spontaneous or traumatic bleeds, annualised bleeding rate (ABR), ISTH Bleeding Assessment Tool (ISTH-BAT), Higham score;<\/li>\n<li>surgery and invasive procedures, and their treatment;<\/li>\n<li>obstetric events and their treatment;<\/li>\n<li>serious adverse events (SAEs).<\/li>\n<\/ul>\n<h2>5. Treatment<\/h2>\n<ul>\n<li><strong>Replacement therapy:<\/strong> products used, treatment periods, treatment regimens, efficacy and\/or adherence;<\/li>\n<li><strong>Non-replacement therapy:<\/strong> products used, indications and regimens for events and for certain disorders.<\/li>\n<\/ul>\n<h2>6. Laboratory tests<\/h2>\n<h2>7. Patient- or parent-reported data<\/h2>\n<ul>\n<li><strong>General information:<\/strong> origin, place of residence, family situation;<\/li>\n<li><strong>Education:<\/strong> level of education, qualifications, educational choices related to the disorder;<\/li>\n<li><strong>Employment:<\/strong> current employment, type of contract, socio-professional category, difficulties at work, sick leave;<\/li>\n<li><strong>Social situation:<\/strong> social welfare benefits related to the disorder;<\/li>\n<li><strong>Household income:<\/strong> sources of income, financial difficulties;<\/li>\n<li><strong>Physical activity:<\/strong> sports practised and frequency;<\/li>\n<li><strong>Life events;<\/strong><\/li>\n<li><strong>Health status:<\/strong> EQ-5D;<\/li>\n<li><strong>Healthcare:<\/strong> participation in therapeutic patient education programmes, distance between home and treatment centre, treatment adherence;<\/li>\n<li><strong>Quality of life:<\/strong> WHOQOL and VSPA (adolescent quality of life) questionnaires.<\/li>\n<\/ul>\n<h2>Questionnaires (in French)<\/h2>\n<ul>\n<li><a href=\"https:\/\/www.francecoag.org\/wp-content\/uploads\/2025\/03\/Questionnaire-V3-Hemophilie-25072023.pdf\">Haemophilia questionnaire<\/a><\/li>\n<li><a href=\"https:\/\/www.francecoag.org\/wp-content\/uploads\/2025\/03\/Questionnaire-V3-Willebrand-25072023.pdf\">Von Willebrand disease questionnaire<\/a><\/li>\n<li><a href=\"https:\/\/www.francecoag.org\/wp-content\/uploads\/2025\/03\/Questionnaire-V3-PP-25072023.pdf\">Platelet disorders questionnaire<\/a><\/li>\n<li><a href=\"https:\/\/www.francecoag.org\/wp-content\/uploads\/2025\/03\/Questionnaire-V3-Autres-DHPC-25072023.pdf\">Other rare factor deficiencies questionnaire<\/a><\/li>\n<li><a href=\"https:\/\/www.francecoag.org\/wp-content\/uploads\/2025\/04\/4_DP1_Questionnaire-donnees-patients-adultes.pdf\">Patient-reported data \u2013 adults<\/a><\/li>\n<li><a href=\"https:\/\/www.francecoag.org\/wp-content\/uploads\/2025\/04\/4_DP2_Questionnaire-donnees-patients-adolescents-11-17-ans.pdf\">Patient-reported data \u2013 adolescents aged 11\u201317<\/a><\/li>\n<li><a href=\"https:\/\/www.francecoag.org\/wp-content\/uploads\/2025\/04\/4_DP3_Questionnaire-donnees-patients-enfants-8-10-ans.pdf\">Patient-reported data \u2013 children aged 8\u201310<\/a><\/li>\n<li><a href=\"https:\/\/www.francecoag.org\/wp-content\/uploads\/2025\/04\/4_DP4_Questionnaire-donnees-parents-enfants-0-7-ans-et-8-10-ans.pdf\">Parent-reported data \u2013 children aged 0\u20137 and 8\u201310<\/a><\/li>\n<\/ul>\n<h2>Reference<\/h2>\n<p id=\"ref1\"><small><a href=\"#ref1-texte\">1.<\/a> White GC 2nd, Rosendaal F, Aledort LM, Lusher JM, Rothschild C, Ingerslev J; Factor VIII and Factor IX Subcommittee. Definitions in hemophilia. Recommendation of the scientific subcommittee on factor VIII and factor IX of the Scientific and Standardization Committee of the International Society on Thrombosis and Haemostasis. Thromb Haemost. 2001;85(3):560.<\/small><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Data collected in FranceCoag are grouped into seven main questionnaires. 1. Patient identification Surname, first names, French social security number [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":565,"menu_order":7,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-567","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Data collected and questionnaires - FranceCoag<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.francecoag.org\/en\/project-francecoag\/data-collection-and-questionnaires\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Data collected and questionnaires - FranceCoag\" \/>\n<meta property=\"og:description\" content=\"Data collected in FranceCoag are grouped into seven main questionnaires. 1. 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