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AUTOIMMUNE CYTOPENIA REGISTRY IN MIDI-PYRENEÉS REGION

France, 2013 - 2023
Reference ID
FRESH-PEF5294-en
Producer(s)
Daniel Adoue, Guillaume Moulis
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
  • 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
    France
    Abstract

    To describe the epidemiology of immune thrombocytopenic purpura (ITP) and of autoimmune hemolytic anemia (AIHA) , real-life exposure to treatments and their risk-benefit ratio.
    Kind of Data

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

    Individuals

    Scope

    Topics
    Topic Vocabulary URI
    Hematology health theme
    Clinical immunology health theme
    cim-11 http://id.who.int/icd/entity/952576129
    cim-11 http://id.who.int/icd/entity/1753426940
    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": [
    "Male",
    "Female"
    ],
    "level_age_clusion_I": [
    "Young Adult (19 to 24 years)",
    "Adult (25 to 44 years)",
    "Middle Aged (45 to 64 years)",
    "Aged (65 to 79 years)",
    "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
    Daniel Adoue
    Guillaume Moulis
    Producers
    Name Role
    CENTRE HOSPITALIER UNIVERSITAIRE DE TOULOUSE (CHUT) sponsor
    INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE (INSERM) sponsor
    Funding Agency/Sponsor
    Name
    CSL BEHRING S.A.
    NOVARTIS PHARMA SAS
    SOCIETE NATIONALE FRANCAISE DE MEDECINE INTERNE (SNFMI)
    CENTRE HOSPITALIER UNIVERSITAIRE DE TOULOUSE (CHUT)

    Study authorization

    Agency
    Agency name
    CNIL
    CESREES

    Sampling

    Sampling Procedure

    ['Other']

    Survey instrument

    Questionnaires

    Access on specific project only
    Methodology notes

    Observational Study

    Data collection

    Dates of Data Collection
    Start End
    2013 2023
    Time Method

    Morbidity registry
    Mode of data collection
    • Self-administered questionnaire
    • 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

    Restricted access

    Contacts

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

    Metadata production

    DDI Document ID

    FRESH-PEF5294-en
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