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Cohort of children with chromosomal structure abnormality

France, 2007 - 3000
Reference ID
FRESH-PEF60091-en
Producer(s)
Alain;VERLOES
Metadata
DDI/XML JSON
Study website Interactive tools
Created on
Feb 18, 2026
Last modified
Feb 18, 2026
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41
  • Identification
  • Scope
  • Coverage
  • Producers and sponsors
  • Study authorization
  • Sampling
  • Survey instrument
  • Data collection
  • Study activities
  • Data Access
  • Contacts

    • Identification

    Survey ID number

    FRESH-PEF60091-en
    Title

    Cohort of children with chromosomal structure abnormality
    Abbreviation or Acronym

    CEPACS
    Country
    Name Country code
    France fr
    Kind of Data

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

    Individuals

    Scope

    Topics
    Topic Vocabulary
    Clinical immunology health theme
    Biological determinants: Genetic predisposition health determinant
    Biological determinants health determinant
    Keywords
    Health events cytogenetic reorganization motor cognitive and physical development psychometric assessments education institutional caring

    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":"Child (6 to 12 years)","concept":{"vocab":"MeSH","vocabURI":"D002648"}},{"value":"Adolescent (13 to 18 years)","concept":{"vocab":"MeSH","vocabURI":"D000293"}}],"level_type_clusion_I":"Patients population","level_type_clusion_other":"","clusion_I":"Chromosomal structure micro-reorganizations detected through molecular cytogenetic (Fish or CGH Array)","clusion_E":""}

    Producers and sponsors

    Primary investigators
    Name
    Alain;VERLOES
    Producers
    Name Role
    ASSISTANCE PUBLIQUE HOPITAUX DE PARIS (AP-HP) sponsor
    Other Identifications/Acknowledgments
    Name
    Participation in a cohort network: CEMARA - platform shared by 32 reference centers for rare diseases

    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

    Questionnaires

    Access on specific project only
    Methodology notes

    Observational Study

    Data collection

    Dates of Data Collection
    Start End
    2007-01-01 3000-01-01
    Mode of data collection
    • {"concept":{"vocabURI":"Interview","vocab":"CESSDA"},"value":"Interview with the participant (including clinical)"}

    Study activities

    Study activities
    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

    Possible data utilization by academic teams? Yes. Contractual access conditions. Data utilization available for industry sectors? Non

    Contacts

    Contacts
    Name Email
    Alain;VERLOES alain.verloes@aphp.fr
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