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AUTOIMMUNE CYTOPENIA REGISTRY IN MIDI-PYRENEÉS REGION

France, 2013 - 2023
Reference ID
FRESH-PEF5294-en
Producer(s)
Guillaume;MOULIS, Daniel;ADOUE
Metadata
DDI/XML JSON
Created on
Dec 15, 2025
Last modified
Dec 15, 2025
Page views
12
  • Identification
  • Scope
  • Coverage
  • Producers and sponsors
  • Sampling
  • Survey instrument
  • Data collection
  • Study activities
  • Quality standards
  • Data Access
  • Contacts
  • Metadata production

    • Identification

    Survey ID number

    FRESH-PEF5294-en
    Title

    AUTOIMMUNE CYTOPENIA REGISTRY IN MIDI-PYRENEÉS REGION
    Abbreviation or Acronym

    CARMEN
    Country
    Name Country code
    France fr
    Kind of Data

    ['Clinical data','Participant-reported health data','Biological data']
    Unit of Analysis

    Individuals

    Scope

    Topics
    Topic Vocabulary
    Hematology health theme
    Clinical immunology health theme
    Coagulation defects, purpura or other haemorrhagic or related conditions cim-11
    Acquired haemolytic anaemia cim-11
    Healthcare system determinants: Use of care health determinant
    Healthcare system determinants health determinant
    Keywords
    immune thromboctyopenia autoimmune hemolytic anemia registry epidemiology pharmacoepidemiology

    Coverage

    Geographic Coverage

    ['Occitanie']
    Universe

    {
    "level_sex_clusion_I": [
    {
    "value": "Male",
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D008297"
    }
    },
    {
    "value": "Female",
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D005260"
    }
    }
    ],
    "level_age_clusion_I": [
    {
    "value": "Young Adult (19 to 24 years)",
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D055815"
    }
    },
    {
    "value": "Adult (25 to 44 years)",
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D000328"
    }
    },
    {
    "value": "Middle Aged (45 to 64 years)",
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D008875"
    }
    },
    {
    "value": "Aged (65 to 79 years)",
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D000368"
    }
    },
    {
    "value": "Aged, 80 and over (80 years and more)",
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D000369"
    }
    }
    ],
    "level_type_clusion_I": "Patients population",
    "level_type_clusion_other": "",
    "clusion_I": "",
    "clusion_E": ""
    }

    Producers and sponsors

    Primary investigators
    Name
    Guillaume;MOULIS
    Daniel;ADOUE
    Producers
    Name
    CENTRE HOSPITALIER UNIVERSITAIRE DE TOULOUSE (CHUT)
    INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE (INSERM)
    Funding Agency/Sponsor
    Name
    CSL BEHRING S.A.
    NOVARTIS PHARMA SAS
    SOCIETE NATIONALE FRANCAISE DE MEDECINE INTERNE (SNFMI)
    CENTRE HOSPITALIER UNIVERSITAIRE DE TOULOUSE (CHUT)

    Sampling

    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
    2013-01-01 2023-01-01
    Mode of data collection
    • {"concept":{"vocabURI":"SelfAdministeredQuestionnaire","vocab":"CESSDA"},"value":"Self-administered questionnaire"}
    • {"concept":{"vocabURI":"Transcription","vocab":"CESSDA"},"value":"Converting or copying information into a structured record"}

    Study activities

    Study activities
    Type
    primary evaluation
    Description
    Health event/morbidity Health event/mortality Health care consumption and services Quality of life/health perception

    Quality standards

    Other quality statement

    ['Check of data by medical record review by Reserch Assistant and medicine doctor specilized in autoimmune cytopenia if necessary']

    Data Access

    Access conditions

    Consult person in charge.
    Availability Status

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

    Contacts

    Contacts
    Name Email
    Guillaume;MOULIS moulis.g@chu-toulouse.fr

    Metadata production

    DDI Document ID

    FRESH-PEF5294-en
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