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French Cohort Study on Ataxia Telangiectasia

Belgium, Luxembourg, France, 2003 - 2024
Reference ID
FRESH-PEF60031-en
Producer(s)
Nadine;ANDRIEU
Metadata
DDI/XML JSON
Study website Interactive tools
Created on
Dec 18, 2025
Last modified
Dec 18, 2025
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2
  • Identification
  • Scope
  • Coverage
  • Producers and sponsors
  • Sampling
  • Survey instrument
  • Data collection
  • Study activities
  • Data Access
  • Contacts
  • Metadata production

    • Identification

    Survey ID number

    FRESH-PEF60031-en
    Title

    French Cohort Study on Ataxia Telangiectasia
    Abbreviation or Acronym

    CoF-AT
    Country
    Name Country code
    Belgium be
    Luxembourg lu
    France fr
    Kind of Data

    ['Clinical data','Participant-reported health data','Biological data','Paraclinical data (non-biological) : Imaging']
    Unit of Analysis

    Individuals

    Scope

    Topics
    Topic Vocabulary
    Oncology health theme
    Retinal venous occlusions cim-11
    Biological determinants: Genetic predisposition health determinant
    Biological determinants health determinant
    Keywords
    Health episodes cancer environment

    Coverage

    Universe

    {
    "level_sex_clusion_I": [
    {
    "value": "Female",
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D005260"
    }
    }
    ],
    "level_age_clusion_I": [
    {
    "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"
    }
    }
    ],
    "level_type_clusion_I": "General population",
    "level_type_clusion_other": "",
    "clusion_I": "",
    "clusion_E": ""
    }

    Producers and sponsors

    Primary investigators
    Name
    Nadine;ANDRIEU
    Producers
    Name
    INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE (INSERM)
    Funding Agency/Sponsor
    Name
    ELECTRICITE DE FRANCE (EDF)
    FONDATION DE FRANCE
    FONDATION ENTREPRISE MGEN SANTE PUBLIQUE (FSP MGEN)
    INSTITUT CURIE
    LIGUE NATIONALE CONTRE LE CANCER (LNCC)
    INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE (INSERM)
    MINISTERE DE L’ENSEIGNEMENT SUPERIEUR, DE LA RECHERCHE ET DE L’ESPACE

    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

    Questionnaires

    Access on specific project only
    Methodology notes

    Observational Study

    Data collection

    Dates of Data Collection
    Start End
    2003-01-01 2024-01-01
    Mode of data collection
    • {"concept":{"vocabURI":"SelfAdministeredQuestionnaire","vocab":"CESSDA"},"value":"Self-administered questionnaire"}
    • {"concept":{"vocabURI":"Interview","vocab":"CESSDA"},"value":"Interview with the participant (including clinical)"}

    Study activities

    Study activities
    Type
    primary evaluation
    Description
    Health event/morbidity Health event/mortality

    Data Access

    Availability Status

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

    Data may be used by academic teams Data may not be used by industrial teams

    Contacts

    Contacts
    Name Email
    Nadine;ANDRIEU nadine.andrieu@curie.net

    Metadata production

    DDI Document ID

    FRESH-PEF60031-en
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