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CADASIL patient cohort

France, 2006 - 2007
Reference ID
FRESH-PEF60170-en
Producer(s)
Hugues;CHABRIAT
Metadata
DDI/XML JSON
Study website Interactive tools
Created on
Feb 18, 2026
Last modified
Feb 18, 2026
Page views
43
  • Identification
  • Scope
  • Coverage
  • Producers and sponsors
  • Study authorization
  • Sampling
  • Survey instrument
  • Data collection
  • Study activities
  • Data Access
  • Contacts

    • Identification

    Survey ID number

    FRESH-PEF60170-en
    Title

    CADASIL patient cohort
    Abbreviation or Acronym

    CADASIL
    Country
    Name Country code
    France fr
    Kind of Data

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

    Individuals

    Scope

    Topics
    Topic Vocabulary
    Neurology health theme
    Socio-demographic and economic determinants: Employment health determinant
    Socio-demographic and economic determinants health determinant
    Keywords
    cognitive decline mobility impairment migraine ischaemic stroke epileptic seizure Health episodes apathy hospitalisation health system

    Coverage

    Geographic Coverage

    ['Ile-de-France']
    Universe

    {"level_sex_clusion_I":[{"value":"Male","concept":{"vocab":"MeSH","vocabURI":"D008297"}},{"value":"Female","concept":{"vocab":"MeSH","vocabURI":"D005260"}}],"level_age_clusion_I":[{"value":"Aged, 80 and over (80 years and more)","concept":{"vocab":"MeSH","vocabURI":"D000369"}}],"level_type_clusion_I":"Patients population","level_type_clusion_other":"","clusion_I":"Adult patients with Notch 3 genetic mutation thought to cause CADASIL","clusion_E":""}

    Producers and sponsors

    Primary investigators
    Name
    Hugues;CHABRIAT
    Producers
    Name Role
    ASSISTANCE PUBLIQUE HOPITAUX DE PARIS (AP-HP) sponsor
    Funding Agency/Sponsor
    Name
    association DE RECHERCHE EN NEUROLOGIE VASCULAIRE (ARNEVA)
    CADASIL FRANCE
    MINISTERE DU TRAVAIL, DE LA SANTE, DES SOLIDARITES ET DES FAMILLES
    CENTRE DE MALADIES RARES

    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
    2006-01-01 2007-01-01
    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

    To be decided by scientist in charge
    Availability Status

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

    Contacts

    Contacts
    Name Email
    Hugues;CHABRIAT hugues.chabriat@aphp.fr
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