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Longitudinal Study of Patients with Epilepsy: Medical and Social Outcome Study

France, 1995 - 1996
Reference ID
FRESH-PEF9316-en
Producer(s)
Pierre;JALLON
Metadata
DDI/XML JSON
Study website Interactive tools
Created on
Feb 18, 2026
Last modified
Feb 18, 2026
Page views
68
  • Identification
  • Scope
  • Coverage
  • Producers and sponsors
  • Study authorization
  • Sampling
  • Survey instrument
  • Data collection
  • Study activities
  • Data Access

    • Identification

    Survey ID number

    FRESH-PEF9316-en
    Title

    Longitudinal Study of Patients with Epilepsy: Medical and Social Outcome Study
    Abbreviation or Acronym

    C.A.R.O.L.E: Active network coordination of longitudinal epilepsy observatory
    Country
    Name Country code
    France fr
    Kind of Data

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

    Individuals

    Scope

    Topics
    Topic Vocabulary
    Neurology health theme
    Keywords
    First seizure drug-resistant crisis

    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":"Child, Preschool (2 to 5 years)","concept":{"vocab":"MeSH","vocabURI":"D002675"}},{"value":"Child (6 to 12 years)","concept":{"vocab":"MeSH","vocabURI":"D002648"}},{"value":"Adolescent (13 to 18 years)","concept":{"vocab":"MeSH","vocabURI":"D000293"}},{"value":"Young Adult (19 to 24 years)","concept":{"vocab":"MeSH","vocabURI":"D055815"}},{"value":"Adult (25 to 44 years)","concept":{"vocab":"MeSH","vocabURI":"D000328"}},{"value":"Middle Aged (45 to 64 years)","concept":{"vocab":"MeSH","vocabURI":"D008875"}}],"level_type_clusion_I":"Patients population","level_type_clusion_other":"","clusion_I":"men and women - having experienced first epileptic seizure between 01/05/1995 and 30/06/1996","clusion_E":""}

    Producers and sponsors

    Primary investigators
    Name
    Pierre;JALLON
    Producers
    Name Role
    FONDATION FRANCAISE POUR LA RECHERCHE SUR L'EPILEPSIE (FFRE) sponsor
    Funding Agency/Sponsor
    Name
    FONDATION FRANCAISE POUR LA RECHERCHE SUR L'EPILEPSIE (FFRE)

    Study authorization

    Agency
    Agency name
    CNIL

    Sampling

    Sample frame

    Unit Type

    ['Through organizations (health services or institutions, schools, businesses, etc.)','Through independent healthcare practitioners']
    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
    1995-01-01 1996-01-01
    Mode of data collection
    • {"concept":{"vocabURI":"Transcription","vocab":"CESSDA"},"value":"Converting or copying information into a structured record"}
    • {"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

    Access conditions

    Contact the principal investigator
    Availability Status

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