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Registry of Congenital Malformations in Alsace (Certified Regisrtry)

France, 2004 - 2005
Reference ID
FRESH-PEF62-en
Producer(s)
Danaluiza;TIMBOLSCHI
Metadata
DDI/XML JSON
Study website Interactive tools
Created on
Feb 18, 2026
Last modified
Feb 18, 2026
Page views
32
  • 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-PEF62-en
    Title

    Registry of Congenital Malformations in Alsace (Certified Regisrtry)
    Abbreviation or Acronym

    REMACA
    Country
    Name Country code
    France fr
    Kind of Data

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

    Individuals

    Scope

    Topics
    Topic Vocabulary
    Behavioral determinants: Addiction health determinant
    Socio-demographic and economic determinants health determinant
    Biological determinants: Genetic predisposition health determinant
    Healthcare system determinants: Use of care health determinant
    Socio-demographic and economic determinants: Employment health determinant
    Behavioral determinants health determinant
    Biological determinants health determinant
    Healthcare system determinants health determinant
    Keywords
    prenatal diagnosis

    Coverage

    Geographic Coverage

    ['Grand Est']
    Universe

    {"level_sex_clusion_I":[{"value":"Male","concept":{"vocab":"MeSH","vocabURI":"D008297"}},{"value":"Female","concept":{"vocab":"MeSH","vocabURI":"D005260"}}],"level_age_clusion_I":[{"value":"Infant, Newborn (birth to 28 days)","concept":{"vocab":"MeSH","vocabURI":"D007231"}},{"value":"Infant (28 days to 2 years)","concept":{"vocab":"MeSH","vocabURI":"D007223"}}],"level_type_clusion_I":"People with disabilities","level_type_clusion_other":"","clusion_I":"Reported cases of malformations visible at the clinical and visceral examination, as well as identified or non-identified malformation syndromes, including those linked to chromosomal defects until two years old.. Recorded cases in the both Alsace départements and where parents are only residing both Alsace départements.","clusion_E":""}

    Producers and sponsors

    Primary investigators
    Name
    Danaluiza;TIMBOLSCHI
    Producers
    Name Role
    UNIVERSITE DE STRASBOURG sponsor
    Funding Agency/Sponsor
    Name
    INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE (INSERM)
    SANTE PUBLIQUE FRANCE

    Study authorization

    Agency
    Agency name
    CNIL

    Sampling

    Sample frame

    Unit Type

    ['']
    Sampling Procedure

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

    Survey instrument

    Questionnaires

    Free access
    Methodology notes

    Observational Study

    Data collection

    Dates of Data Collection
    Start End
    2005-01-01 2004-01-01
    Mode of data collection
    • {"concept":{"vocabURI":"Other","vocab":"CESSDA"},"value":"Other"}

    Study activities

    Study activities
    Type
    primary evaluation
    Description
    Health event/morbidity Health event/mortality Health care consumption and services

    Quality standards

    Quality standards
    Standard
    ['CIM10 for malformations and diseases, ATC code for medication.']

    Data Access

    Access conditions

    Individual data: on request.
    Availability Status

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

    Contacts

    Contacts
    Name Email
    Danaluiza;TIMBOLSCHI danaluiza.timbolschi@chru-strasbourg.fr
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