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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, Andréa;BLIVET
Metadata
DDI/XML JSON
Study website Interactive tools
Created on
Jun 09, 2026
Last modified
Jul 01, 2026
Page views
12
  • Study Description
  • Get Microdata
  • Identification
  • Scope
  • Coverage
  • Producers and sponsors
  • Study authorization
  • Sampling
  • Survey instrument
  • Data collection
  • Study activities
  • Data Access
  • Contacts
  • Metadata production
  • 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
    Abstract

    First edit by Andréa

    Kind of Data

    ['Clinical data','Biological data','Participant-reported health data']

    Unit of Analysis

    Individus

    Scope

    Topics
    Topic Vocabulary
    Cardiology and vascular medicine health theme
    Amyloidosis cim-11
    Biological determinants health determinant
    Biological determinants: Genetic predisposition health determinant
    Keywords
    heredity under-diagnosis mutation prevalence

    Coverage

    Universe

    {
    "level_sex_clusion_I": [
    {
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "D005260"
    },
    "value": "Female"
    },
    {
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "D008297"
    },
    "value": "Male"
    }
    ],
    "level_age_clusion_I": [
    {
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "D055815"
    },
    "value": "Young Adult (19 to 24 years)"
    },
    {
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "D000328"
    },
    "value": "Adult (25 to 44 years)"
    },
    {
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "D008875"
    },
    "value": "Middle Aged (45 to 64 years)"
    },
    {
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "D000368"
    },
    "value": "Aged (65 to 79 years)"
    },
    {
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "D000369"
    },
    "value": "Aged, 80 and over (80 years and more)"
    }
    ],
    "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
    Andréa;BLIVET
    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)
    Other Identifications/Acknowledgments
    Name
    ;

    Study authorization

    Agency
    Agency name
    CNIL

    Sampling

    Sample frame

    Unit Type

    ['Through organizations (health services or institutions, schools, businesses, etc.)']

    Sampling Procedure

    ['{"concept":{"vocab":"CESSDA","vocabURI":"Other"},"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

    Repeated cross-sectional study

    Frequency of Data Collection

    First edit by Andréa

    Mode of data collection
    • {"concept":{"vocab":"CESSDA","vocabURI":"Transcription"},"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
    Study activities
    Type
    secondary evaluation
    Description
    Edited by Stefy

    Data Access

    Access authority
    Name Email
    Andréa;BLIVET andrea.blivet@gmail.com
    Access conditions

    Contact the principal investigator

    Availability Status

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

    Special Permissions
    Indicate if special permissions are required to access a resource
    No

    Contacts

    Contacts
    Name Email
    Thibaud;DAMY stefy.gbokou@inserm.fr
    Violaine;PLANTE-BORDENEUVE aloyse.bardi-de-fourtou@inserm.fr
    Michel;SLAMA andrea.blivet@gmail.com

    Metadata production

    DDI Document ID

    FRESH-PEF8655-en

    Producers
    Name
    Lesya Baudoin
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