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Patients with Marfan Syndrome or Related Conditions

France, 1996 - 3000
Reference ID
FRESH-PEF60099-en
Producer(s)
Guillaume;JONDEAU
Metadata
DDI/XML JSON
Study website Interactive tools
Created on
Feb 18, 2026
Last modified
Feb 18, 2026
Page views
36
  • Identification
  • Scope
  • Coverage
  • Producers and sponsors
  • Study authorization
  • Sampling
  • Survey instrument
  • Data collection
  • Study activities
  • Data Access
  • Contacts

    • Identification

    Survey ID number

    FRESH-PEF60099-en
    Title

    Patients with Marfan Syndrome or Related Conditions
    Abbreviation or Acronym

    MARFAN
    Country
    Name Country code
    France fr
    Kind of Data

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

    Individuals

    Scope

    Topics
    Topic Vocabulary
    Cardiology and vascular medicine health theme
    Marfan syndrome or Marfan-related disorders cim-11
    Biological determinants: Genetic predisposition health determinant
    Behavioral determinants health determinant
    Socio-demographic and economic determinants: Employment health determinant
    Biological determinants health determinant
    Socio-demographic and economic determinants health determinant
    Keywords
    aortic dissection surgery mitral valve crystalline orthopaedics Health episodes

    Coverage

    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"}}],"level_type_clusion_I":"Patients population","level_type_clusion_other":"","clusion_I":"Adults attending specialist consultation for Marfan syndrome and related conditions","clusion_E":""}

    Producers and sponsors

    Primary investigators
    Name
    Guillaume;JONDEAU
    Producers
    Name Role
    INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE (INSERM) sponsor
    Funding Agency/Sponsor
    Name
    FEDERATION FRANCAISE DE CARDIOLOGIE
    ASSOCIATION DE SOUTIEN A LA FILIALE D'IMAGERIE CARDIOVASCULAIRE DE LA SOCIETE FRANCAISE DE CARDIOLOGIE (ASFIC)
    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

    ['{"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
    1996-01-01 3000-01-01
    Mode of data collection
    • {"concept":{"vocabURI":"Interview","vocab":"CESSDA"},"value":"Interview with the participant (including clinical)"}

    Study activities

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

    Data Access

    Availability Status

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

    Data may be used by academic teams Contractual access Data may be used by industrial teams: to be decided Access determined on a case by case basis

    Contacts

    Contacts
    Name Email
    Guillaume;JONDEAU guillaume.jondeau@aphp.fr
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