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Youg Onset Dementia

France, 2009
Reference ID
FRESH-PEF5391-en
Producer(s)
Florence Pasquier, Florence Richard
Metadata
DDI/XML JSON
Created on
Nov 15, 2025
Last modified
Nov 15, 2025
Page views
5
  • 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-PEF5391-en
    Title

    Youg Onset Dementia
    Abbreviation or Acronym

    YOD
    Country
    Name
    France
    Abstract

    Collect of medical, medicosocial, economic, neuropsychological,biological and imaging information in young patients consulting at CNR-MAJ, with follow-up every 6 months until death. If specific consent has been granted, an autopsy for neuropathological confirmation of the diagnosis will be performed. Primary objective - To determine the diagnostic and medicosocial pathways followed by young patients suffering from early onset dementia Secondary objectives - To evaluate factors associated with diagnostic delay - To constitute clinical, imaging and biological resources for this dementia occuring in young subjects.
    Kind of Data

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

    Individuals

    Scope

    Topics
    Topic Vocabulary URI
    Paediatrics health theme
    Psychiatry health theme
    cim-11 http://id.who.int/icd/entity/465472056
    Socio-demographic and economic determinants health determinant
    Keywords
    Dementia Alzheimer's disease Frontotemporal dementia Vascular dementia Dementia with Lewy bodies Early Onset Pronostic factors Social impact Medical pathway genetics

    Coverage

    Universe

    {
    "level_sex_clusion_I": [
    "Male",
    "Female"
    ],
    "level_age_clusion_I": [
    "Adult (25 to 44 years)",
    "Middle Aged (45 to 64 years)",
    "Aged (65 to 79 years)"
    ],
    "level_type_clusion_I": [
    "Patients population"
    ],
    "level_type_clusion_other": "",
    "clusion_I": "",
    "clusion_E": ""
    }

    Producers and sponsors

    Primary investigators
    Name
    Florence Pasquier
    Florence Richard
    Producers
    Name Role
    CENTRE HOSPITALIER UNIVERSITAIRE DE LILLE (CHU) sponsor
    UNIVERSITE DE LILLE sponsor
    Funding Agency/Sponsor
    Name
    MINISTERE DU TRAVAIL, DE LA SANTE, DES SOLIDARITES ET DES FAMILLES

    Study authorization

    Agency
    Agency name
    CNIL
    CESREES
    Autre

    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
    2009
    Time Method

    Morbidity registry
    Mode of data collection
    • Converting or copying information into a structured record

    Study activities

    Study activities
    Type
    primary evaluation
    Description
    Health event/morbidity Health event/mortality Others

    Data Access

    Availability Status

    To be defined

    Contacts

    Contacts
    Name Email
    Florence Pasquier florence.richard@pasteur-lille.fr
    Florence Richard florence.pasquier@chru-lille.fr

    Metadata production

    DDI Document ID

    FRESH-PEF5391-en
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