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Cohort of Patients with Hypertrophic Cardiomyopathy: Prospective Screening for Fabry Disease

France, 2006 - 2008
Reference ID
FRESH-PEF7340-en
Producer(s)
Albert;HAGEGE
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
  • Data Access
  • Contacts

    • Identification

    Survey ID number

    FRESH-PEF7340-en
    Title

    Cohort of Patients with Hypertrophic Cardiomyopathy: Prospective Screening for Fabry Disease
    Abbreviation or Acronym

    FOCUS
    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
    Cardiology and vascular medicine health theme
    Fabry disease cim-11
    Keywords
    filter paper α-galactosidase A enzyme screening prevalence

    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"}},{"value":"Aged (65 to 79 years)","concept":{"vocab":"MeSH","vocabURI":"D000368"}}],"level_type_clusion_I":"Patients population","level_type_clusion_other":"","clusion_I":"– men and women – between 18 and 79 years old – with hypertrophic cardiomyopathy","clusion_E":""}

    Producers and sponsors

    Primary investigators
    Name
    Albert;HAGEGE
    Producers
    Name Role
    ASSISTANCE PUBLIQUE HOPITAUX DE PARIS (AP-HP) sponsor
    Funding Agency/Sponsor
    Name
    SANOFI (FRANCE)

    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
    2006-01-01 2008-01-01
    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"}
    • {"concept":{"vocabURI":"MeasurementsAndTests.Physical","vocab":"CESSDA"},"value":"Physical/biological measurements (blood pressure, weight, biochemistry, imaging, etc.)"}

    Data Access

    Access conditions

    Contact the principal investigator
    Availability Status

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

    Contacts

    Contacts
    Name Email
    Albert;HAGEGE albert.hagege@aphp.fr
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