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    Home / Central Data Catalog / FRESH-PEF219-EN
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French cystic fibrosis register (qualified register)

France, 1992 - 3000
Reference ID
FRESH-PEF219-en
Producer(s)
Gilles;RAULT, Virginie;COLOMB-JUNG
Metadata
DDI/XML JSON
Study website Interactive tools
Created on
Feb 18, 2026
Last modified
Feb 18, 2026
Page views
2
  • Study Description
  • Get Microdata
  • Identification
  • Scope
  • Coverage
  • Producers and sponsors
  • Sampling
  • Survey instrument
  • Data collection
  • Study activities
  • Data Access
  • Contacts
  • Metadata production
  • Identification

    Survey ID number

    FRESH-PEF219-en

    Title

    French cystic fibrosis register (qualified register)

    Country
    Name Country code
    France fr
    Kind of Data

    ['Clinical data','Biological data','Socio-demographic data','Paraclinical data (non-biological) : Function testing']

    Unit of Analysis

    Individuals

    Scope

    Topics
    Topic Vocabulary
    Pulmonary medicine health theme
    Cystic fibrosis cim-11
    Biological determinants: Genetic predisposition health determinant
    Biological determinants health determinant

    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"
    }
    }
    ],
    "level_type_clusion_I": [
    "Patients population"
    ],
    "level_type_clusion_other": "",
    "clusion_I": "The criteria for inclusion in the registry are - in addition to consent by the patient and\/or parents for data to be used - those defined by the 1998 consensus conference of the Cystic Fibrosis Foundation and reported by Rosenstein and Cutting. These combine clinical and biological criteria: 1) the presence of one or more phenotypic characteristics or a family history of cystic fibrosis among siblings, or an increased rate of immunoreactive trypsin (neonatal screening) and 2) two positive sweat tests, or two mutations identified of the CFTR gene, or a pathological nasal transepithelial potential difference. This definition of cystic fibrosis is currently being amended in the registry following the recommendations in J Ped 2008:153:S4-S14",
    "clusion_E": ""
    }

    Producers and sponsors

    Primary investigators
    Name
    Gilles;RAULT
    Virginie;COLOMB-JUNG
    Producers
    Name Role
    VAINCRE LA MUCOVISCIDOSE (AFLM) sponsor
    Funding Agency/Sponsor
    Name
    CENTRE HOSPITALIER UNIVERSITAIRE DE NANTES
    INSTITUT NATIONAL D'ETUDES DEMOGRAPHIQUES (INED)
    VAINCRE LA MUCOVISCIDOSE (AFLM)

    Sampling

    Sampling Procedure

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

    Survey instrument

    Questionnaires

    Access on specific project only

    Methodology notes

    Observational Study

    Data collection

    Dates of Data Collection
    Start End
    1992-01-01 3000-01-01
    Mode of data collection
    • {"concept":{"vocabURI":"Interview","vocab":"CESSDA"},"value":"Interview with the participant (including clinical)"}

    Study activities

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

    Data Access

    Access conditions

    Data demand on : http://www.vaincrelamuco.org/ewb_pages/d/donnees_registre.php

    Availability Status

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

    Contacts

    Contacts
    Name Email
    Gilles;RAULT gilles.rault@ildys.org
    Virginie;COLOMB-JUNG vcolomb@vaincrelamuco.org

    Metadata production

    DDI Document ID

    FRESH-PEF219-en

    Producers
    Name Affiliation
    Virginie COLOMB-JUNG VAINCRE LA MUCOVISCIDOSE (AFLM)
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