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Longitunal study on patients with locked-in syndrome: quality of life and evolution over a 6-year period

France, 2007 - 2013
Reference ID
FRESH-PEF73183-en
Producer(s)
Marie-Christine;ROUSSEAU
Metadata
DDI/XML JSON
Study website Interactive tools
Created on
Feb 18, 2026
Last modified
Feb 18, 2026
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40
  • Identification
  • Scope
  • Coverage
  • Producers and sponsors
  • Study authorization
  • Sampling
  • Survey instrument
  • Data collection
  • Study activities
  • Data Access
  • Contacts

    • Identification

    Survey ID number

    FRESH-PEF73183-en
    Title

    Longitunal study on patients with locked-in syndrome: quality of life and evolution over a 6-year period
    Country
    Name Country code
    France fr
    Kind of Data

    ['Participant-reported health data']
    Unit of Analysis

    Individuals

    Scope

    Topics
    Topic Vocabulary
    Locked-in syndrome cim-11
    Socio-demographic and economic determinants health determinant
    Other health determinant
    Keywords
    Locked-in-syndrome quality of life Anamnestic Comparative Self-Assessment determinants

    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":"Adult (25 to 44 years)","concept":{"vocab":"MeSH","vocabURI":"D000328"}},{"value":"Middle Aged (45 to 64 years)","concept":{"vocab":"MeSH","vocabURI":"D008875"}},{"value":"Aged (65 to 79 years)","concept":{"vocab":"MeSH","vocabURI":"D000368"}}],"level_type_clusion_I":"People with disabilities","level_type_clusion_other":"","clusion_I":"The inclusion criteria were the following: adult patients, patients with LIS diagnoses according to the description of Plum and Posner [17] (i.e., complete or near-total loss of motor function, preservation of eye movements, anarthria, and preserved consciousness and intellectual function), and patients who agreed to participate. ","clusion_E":" minors, and patients with major motor recuperation."}

    Producers and sponsors

    Primary investigators
    Name
    Marie-Christine;ROUSSEAU
    Producers
    Name Role
    ASSISTANCE PUBLIQUE HOPITAUX DE PARIS (AP-HP) sponsor
    Funding Agency/Sponsor
    Name
    ASSISTANCE PUBLIQUE HOPITAUX DE PARIS (AP-HP)

    Study authorization

    Agency
    Agency name
    CNIL

    Sampling

    Sample frame

    Unit Type

    ['Population database for statistical purposes']
    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 2013-01-01
    Mode of data collection
    • {"concept":{"vocabURI":"SelfAdministeredQuestionnaire","vocab":"CESSDA"},"value":"Self-administered questionnaire"}

    Study activities

    Study activities
    Type
    primary evaluation
    Description
    Quality of life/health perception

    Data Access

    Availability Status

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

    Contacts

    Contacts
    Name Email
    Marie-Christine;ROUSSEAU marie-christine.rousseau@aphp.fr
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