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CADASIL patient cohort

France, 2006 - 2007
Reference ID
FRESH-PEF60170-en
Producer(s)
Hugues Chabriat
Metadata
DDI/XML JSON
Created on
Nov 15, 2025
Last modified
Nov 15, 2025
Page views
4
  • Identification
  • Scope
  • Coverage
  • Producers and sponsors
  • Study authorization
  • Sampling
  • Survey instrument
  • Data collection
  • Study activities
  • Data Access
  • Contacts
  • Metadata production

    • Identification

    Survey ID number

    FRESH-PEF60170-en
    Title

    CADASIL patient cohort
    Abbreviation or Acronym

    CADASIL
    Country
    Name
    France
    Abstract

    General objective: prospective study of patients with Notch 3 gene mutation thought to cause CADASIL: research into prognostic factors and useful markers for preventative treatment trial. Secondary objectives: - To determine clinical-radiological correlations - Modifying factors of clinical phenotype and MRI studies - Prognostic and progressive factors - Clinical phenotype variability - Natural history of disease
    Kind of Data

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

    Individuals

    Scope

    Topics
    Topic Vocabulary URI
    Neurology health theme
    cim-11 http://id.who.int/icd/entity/2086182172
    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

    ['Île-de-France']
    Universe

    {
    "level_sex_clusion_I": [
    "Male",
    "Female"
    ],
    "level_age_clusion_I": [
    "Aged, 80 and over (80 years and more)"
    ],
    "level_type_clusion_I": [
    "Patients population"
    ],
    "level_type_clusion_other": "",
    "clusion_I": "",
    "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
    CENTRE DE MALADIES RARES
    MINISTERE DU TRAVAIL, DE LA SANTE, DES SOLIDARITES ET DES FAMILLES

    Study authorization

    Agency
    Agency name
    CNIL

    Sampling

    Sample frame

    Unit Type

    ['Through organizations (health services or institutions, schools, businesses, etc.)']
    Sampling Procedure

    ['Other']

    Survey instrument

    Questionnaires

    Access on specific project only
    Methodology notes

    Observational Study

    Data collection

    Dates of Data Collection
    Start End
    2006 2007
    Time Method

    Longitudinal or cohort study
    Mode of data collection
    • Converting or copying information into a structured record
    • 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

    Restricted access

    Contacts

    Contacts
    Name Email
    Hugues Chabriat hugues.chabriat@aphp.fr

    Metadata production

    DDI Document ID

    FRESH-PEF60170-en
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