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

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','Biological data','Paraclinical data (non-biological) : Function testing']

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": "http:\/\/id.nlm.nih.gov\/mesh\/D008297"
}
},
{
"value": "Female",
"concept": {
"vocab": "MeSH",
"vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D005260"
}
}
],
"level_age_clusion_I": [
{
"value": "Infant, Newborn (birth to 28 days)",
"concept": {
"vocab": "MeSH",
"vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D007231"
}
},
{
"value": "Infant (28 days to 2 years)",
"concept": {
"vocab": "MeSH",
"vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D007223"
}
},
{
"value": "Child, Preschool (2 to 5 years)",
"concept": {
"vocab": "MeSH",
"vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D002675"
}
},
{
"value": "Child (6 to 12 years)",
"concept": {
"vocab": "MeSH",
"vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D002648"
}
},
{
"value": "Young Adult (19 to 24 years)",
"concept": {
"vocab": "MeSH",
"vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D055815"
}
},
{
"value": "Adult (25 to 44 years)",
"concept": {
"vocab": "MeSH",
"vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D000328"
}
},
{
"value": "Middle Aged (45 to 64 years)",
"concept": {
"vocab": "MeSH",
"vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D008875"
}
},
{
"value": "Aged (65 to 79 years)",
"concept": {
"vocab": "MeSH",
"vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D000368"
}
},
{
"value": "Aged, 80 and over (80 years and more)",
"concept": {
"vocab": "MeSH",
"vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/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)

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

Type

primary evaluation

Description

Health event/morbidity Health event/mortality Health care consumption and services Others

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"}]}

Metadata production

DDI Document ID

FRESH-PEF60-en

Producers

Name	Affiliation
Vanessa MILIEN	ASSISTANCE PUBLIQUE HOPITAUX DE MARSEILLE (AP-HM)

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