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FranceCoag Network

France, 1994 - 3000
Reference ID
FRESH-PEF60-en
Producer(s)
Véronique;GOULET
Metadata
DDI/XML JSON
Study website Interactive tools
Created on
Feb 18, 2026
Last modified
Feb 18, 2026
Page views
43
  • Identification
  • Scope
  • Coverage
  • Producers and sponsors
  • Study authorization
  • Sampling
  • Survey instrument
  • Data collection
  • Study activities
  • Quality standards
  • Data Access

    • Identification

    Survey ID number

    FRESH-PEF60-en
    Title

    FranceCoag Network
    Abbreviation or Acronym

    FCN
    Country
    Name Country code
    France fr
    Kind of Data

    ['Clinical data','Paraclinical data (non-biological)','Paraclinical data (non-biological) : Function testing','Biological data']
    Unit of Analysis

    Individuals

    Scope

    Topics
    Topic Vocabulary
    Hematology health theme
    Chronic hepatitis C cim-11
    Chronic hepatitis B cim-11
    Human immunodeficiency virus disease without mention of tuberculosis or malaria cim-11
    Von Willebrand disease cim-11
    Environmental determinants: Other health determinant
    Biological determinants: Genetic predisposition health determinant
    Healthcare system determinants: Use of care health determinant
    Environmental determinants health determinant
    Biological determinants health determinant
    Healthcare system determinants health determinant
    Keywords
    haemophilia von Willebrand disease national registry inhibitor hereditary hemorrhagic diseases replacement therapy prophylaxis

    Coverage

    Universe

    {"level_sex_clusion_I":[{"value":"Male","concept":{"vocab":"MeSH","vocabURI":"D008297"}},{"value":"Female","concept":{"vocab":"MeSH","vocabURI":"D005260"}}],"level_age_clusion_I":[{"value":"Infant, Newborn (birth to 28 days)","concept":{"vocab":"MeSH","vocabURI":"D007231"}},{"value":"Infant (28 days to 2 years)","concept":{"vocab":"MeSH","vocabURI":"D007223"}},{"value":"Child, Preschool (2 to 5 years)","concept":{"vocab":"MeSH","vocabURI":"D002675"}},{"value":"Child (6 to 12 years)","concept":{"vocab":"MeSH","vocabURI":"D002648"}},{"value":"Adolescent (13 to 18 years)","concept":{"vocab":"MeSH","vocabURI":"D000293"}},{"value":"Young Adult (19 to 24 years)","concept":{"vocab":"MeSH","vocabURI":"D055815"}},{"value":"Adult (25 to 44 years)","concept":{"vocab":"MeSH","vocabURI":"D000328"}},{"value":"Middle Aged (45 to 64 years)","concept":{"vocab":"MeSH","vocabURI":"D008875"}},{"value":"Aged (65 to 79 years)","concept":{"vocab":"MeSH","vocabURI":"D000368"}},{"value":"Aged, 80 and over (80 years and more)","concept":{"vocab":"MeSH","vocabURI":"D000369"}}],"level_type_clusion_I":"Patients population","level_type_clusion_other":"","clusion_I":"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%.","clusion_E":""}

    Producers and sponsors

    Primary investigators
    Name
    Véronique;GOULET
    Producers
    Name Role
    SANTE PUBLIQUE FRANCE sponsor
    Funding Agency/Sponsor
    Name
    MINISTERE DU TRAVAIL, DE LA SANTE, DES SOLIDARITES ET DES FAMILLES
    Other Identifications/Acknowledgments
    Name
    Participation in the World Federation of hemophilia (WFH)

    Study authorization

    Agency
    Agency name
    CNIL

    Sampling

    Sample frame

    Unit Type

    ['Through organizations (health services or institutions, schools, businesses, etc.)']
    Sampling Procedure

    ['{"concept":{"vocabURI":"Other","vocab":"CESSDA"},"value":"Other"}']

    Survey instrument

    Methodology notes

    Observational Study

    Data collection

    Dates of Data Collection
    Start End
    1994-01-01 3000-01-01
    Mode of data collection
    • {"concept":{"vocabURI":"Transcription","vocab":"CESSDA"},"value":"Converting or copying information into a structured record"}

    Study activities

    Study activities
    Type
    primary evaluation
    Description
    Health event/morbidity Health event/mortality Health care consumption and services Others

    Quality standards

    Quality standards
    Standard
    ['Coding conventions specific to project.']
    Other quality statement

    ['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).']

    Data Access

    Access conditions

    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.
    Availability Status

    {"value":"Restricted access","extLink":[{"title":"COAR","uri":"http://purl.org/coar/access_right/c_16ec"}]}
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