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Prevalence of Transthyretin Amyloidosis in Hypertrophic Cardiomyopathy

France, 2012 - 2014
Reference ID
FRESH-PEF8655-en
Producer(s)
Thibaud;DAMY, Violaine;PLANTE-BORDENEUVE, Michel;SLAMA
Metadata
DDI/XML JSON
Study website Interactive tools
Created on
Feb 18, 2026
Last modified
Feb 18, 2026
Page views
40
  • Study Description
  • Get Microdata
  • Identification
  • Scope
  • Coverage
  • Producers and sponsors
  • Study authorization
  • Sampling
  • Survey instrument
  • Data collection
  • Study activities
  • Data Access
  • Contacts
  • Identification

    Survey ID number

    FRESH-PEF8655-en

    Title

    Prevalence of Transthyretin Amyloidosis in Hypertrophic Cardiomyopathy

    Abbreviation or Acronym

    AMYLO-STUDY

    Country
    Name Country code
    France fr
    Kind of Data

    ['Clinical data','Paraclinical data (non-biological)','Paraclinical data (non-biological) : Imaging','Paraclinical data (non-biological) : Function testing','Biological data','Participant-reported health data']

    Unit of Analysis

    Individuals

    Scope

    Topics
    Topic Vocabulary
    Cardiology and vascular medicine health theme
    Amyloidosis cim-11
    Biological determinants: Genetic predisposition health determinant
    Biological determinants health determinant
    Keywords
    heredity under-diagnosis mutation 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"}},{"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 years and over; - Cardiomyopathy defined by an ultrasound thickness of the left ventricle greater than or equal to13 mm if familial form, or greater than or equal to 15 mm if sporadic form; - Patients with a signed consent authorising the specific blood test for genetic sequencing to look for an abnormal TTR gene. ","clusion_E":"Significant AS (less than or equal to 1cm2); - Patients with a cardiomyopathy diagnosis (sarcomeric HCM, Fabry disease, etc.) or related already diagnosed.Patients included in the REMY registry (Hypertrophic Cardiomyopathy Registry) may also be included in the amyloid-STUDY. Inclusion criteria are very similar. Some additional data will need to be completed on the page corresponding to the registry."}

    Producers and sponsors

    Primary investigators
    Name
    Thibaud;DAMY
    Violaine;PLANTE-BORDENEUVE
    Michel;SLAMA
    Producers
    Name Role
    ASSOCIATION DE SOUTIEN A LA FILIALE D'IMAGERIE CARDIOVASCULAIRE DE LA SOCIETE FRANCAISE DE CARDIOLOGIE (ASFIC) sponsor
    Funding Agency/Sponsor
    Name
    ASSOCIATION DE SOUTIEN A LA FILIALE D'IMAGERIE CARDIOVASCULAIRE DE LA SOCIETE FRANCAISE DE CARDIOLOGIE (ASFIC)

    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
    2012-01-01 2014-01-01
    Time Method

    One-time cross-sectional study

    Mode of data collection
    • {"concept":{"vocabURI":"Transcription","vocab":"CESSDA"},"value":"Converting or copying information into a structured record"}

    Study activities

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

    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
    Thibaud;DAMY amylo@sfcardio.fr
    Violaine;PLANTE-BORDENEUVE violaine.plante@aphp.fr
    Michel;SLAMA michel.slama@aphp.fr
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