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REGISTRY OF AUTOIMMUNE CYTOPENIAS IN FRANCE

France, 2013 - 3000
Reference ID
FRESH-PEF5294-en
Producer(s)
Guillaume;MOULIS
Metadata
DDI/XML JSON
Study website Interactive tools
Created on
Feb 18, 2026
Last modified
Feb 18, 2026
Page views
38
  • Identification
  • Scope
  • Coverage
  • Producers and sponsors
  • Study authorization
  • Sampling
  • Survey instrument
  • Data collection
  • Study activities
  • Quality standards
  • Data Access
  • Contacts

    • Identification

    Survey ID number

    FRESH-PEF5294-en
    Title

    REGISTRY OF AUTOIMMUNE CYTOPENIAS IN FRANCE
    Abbreviation or Acronym

    CARMEN-France
    Country
    Name Country code
    France fr
    Kind of Data

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

    Individuals

    Scope

    Topics
    Topic Vocabulary
    Hematology health theme
    Clinical immunology health theme
    Immune thrombocytopenic purpura cim-11
    Acquired haemolytic anaemia, immune cim-11
    Healthcare system determinants: Use of care health determinant
    Healthcare system determinants health determinant
    Environmental determinants: Other health determinant
    Socio-demographic and economic determinants: Employment health determinant
    Socio-demographic and economic determinants health determinant
    Keywords
    immune thromboctyopenia autoimmune hemolytic anemia registry epidemiology pharmacoepidemiology

    Coverage

    Geographic Coverage

    ['Grand Est','Nouvelle-Aquitaine','Auvergne Rhône-Alpes','Bourgogne Franche-Comté','Bretagne','Centre-Val de Loire','Ile-de-France','Occitanie','Hauts-de-France','Normandie','Pays de la Loire','Provence - Alpes - Côte d\'Azur']
    Universe

    {"level_sex_clusion_I":[{"value":"Male","concept":{"vocab":"MeSH","vocabURI":"D008297"}},{"value":"Female","concept":{"vocab":"MeSH","vocabURI":"D005260"}}],"level_age_clusion_I":[{"value":"Young Adult (19 to 24 years)","concept":{"vocab":"MeSH","vocabURI":"D055815"}},{"value":"Adult (25 to 44 years)","concept":{"vocab":"MeSH","vocabURI":"D000328"}},{"value":"Middle Aged (45 to 64 years)","concept":{"vocab":"MeSH","vocabURI":"D008875"}},{"value":"Aged (65 to 79 years)","concept":{"vocab":"MeSH","vocabURI":"D000368"}},{"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":"aged 18 or over - new diagnosis of ITP (since 2025, initiation of a maintenance treatment ofr ITP) or AIHA or initiaiton of a newly marketed drug in France for ITP or AIHA - no oppsition to participate","clusion_E":""}

    Producers and sponsors

    Primary investigators
    Name
    Guillaume;MOULIS
    Producers
    Name Role
    INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE (INSERM) sponsor
    CENTRE HOSPITALIER UNIVERSITAIRE DE TOULOUSE (CHUT) sponsor
    Funding Agency/Sponsor
    Name
    CENTRE HOSPITALIER UNIVERSITAIRE DE TOULOUSE (CHUT)
    CSL BEHRING S.A.
    NOVARTIS PHARMA SAS
    SOCIETE NATIONALE FRANCAISE DE MEDECINE INTERNE (SNFMI)
    Other Identifications/Acknowledgments
    Name
    French network of autoimmune cytopenia (CeReCAI). European Research Consortium on ITP (ERCI)

    Study authorization

    Agency
    Agency name
    CNIL
    CESREES

    Sampling

    Sample frame

    Unit Type

    ['Through organizations (health services or institutions, schools, businesses, etc.)','Through independent healthcare practitioners']
    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 3000-01-01
    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

    ['Remote data quality check for all patients on a core set of 100 variables; on-site monitoring done in 2023-2024 in centers in 10% of the database']

    Data Access

    Access conditions

    Upon request, need the apprival by the scientific committee and the sponsor
    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
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