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Study on Long-Term Outcome for Subjects Cured of Childhood Cancer and Adolescents Diagnosed Before 2000 in France

France, 1985 - 3000
Reference ID
FRESH-PEF3229-en
Producer(s)
Florent;DE VATHAIRE, Carole;RUBINO
Metadata
DDI/XML JSON
Study website Interactive tools
Created on
Feb 16, 2026
Last modified
Feb 16, 2026
Page views
3
  • Identification
  • Scope
  • Coverage
  • Producers and sponsors
  • Sampling
  • Survey instrument
  • Data collection
  • Study activities
  • Quality standards
  • Data Access
  • Contacts
  • Metadata production

    • Identification

    Survey ID number

    FRESH-PEF3229-en
    Title

    Study on Long-Term Outcome for Subjects Cured of Childhood Cancer and Adolescents Diagnosed Before 2000 in France
    Abbreviation or Acronym

    FCCSS
    Country
    Name Country code
    France fr
    Kind of Data

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

    Individuals

    Scope

    Topics
    Topic Vocabulary
    Socio-demographic and economic determinants: Employment health determinant
    Behavioral determinants health determinant
    Biological determinants: Genetic predisposition health determinant
    Socio-demographic and economic determinants health determinant
    Healthcare system determinants: Use of care health determinant
    Behavioral determinants: Addiction health determinant
    Biological determinants health determinant
    Healthcare system determinants health determinant
    Keywords
    iatrogenic effects social integration radiology radiotherapy chemotherapy quality of life France mortality cohort solid cancer in childhood and adolescence subsequent cerebrovascular and cardiovascular diseases survivors risk factors of iatrogenic pathologies dosimetric reconstruction second cancer

    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"
    }
    }
    ],
    "level_type_clusion_I": [
    "Patients population"
    ],
    "level_type_clusion_other": "",
    "clusion_I": "",
    "clusion_E": ""
    }

    Producers and sponsors

    Primary investigators
    Name
    Florent;DE VATHAIRE
    Carole;RUBINO
    Producers
    Name Role
    INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE (INSERM) sponsor

    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
    1985-01-01 3000-01-01
    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 Health care consumption and services Quality of life/health perception Others

    Quality standards

    Quality standards
    Standard
    ['International Classification of Diseases (ICD-O, ICD-9, ICD-10); DCI, INSEE municipality and country codes.']

    Data Access

    Access conditions

    The use of anonymised data on the outcome of children cured of cancer from the top 5 cancer centers is possible for any research by a team with proven experience in the field of expertise. Usage is determined on a case-by-case and is governed by an agreement. The use of anonymised FCCSS data shall be possible for any external research team involvong the outcome of children cured of cancer and shall be determined on a case-by-case basis following submission of the project to the cohort scientific committee. Participants from paediatric oncology departments will have access to their patients' data.
    Availability Status

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

    Contacts

    Contacts
    Name Email
    Florent;DE VATHAIRE florent.devathaire@gustaveroussy.fr
    Carole;RUBINO carole.rubino@gustaveroussy.fr

    Metadata production

    DDI Document ID

    FRESH-PEF3229-en
    Producers
    Name Affiliation
    Florent DE VATHAIRE INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE (INSERM)
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