Home / Central Data Catalog / FRESH-PEF69-EN
central

Rhône Alpes birth defects registry

France, 1973
Reference ID
FRESH-PEF69-en
Producer(s)
Emmanuelle;AMAR
Metadata
DDI/XML JSON
Created on
Dec 18, 2025
Last modified
Dec 18, 2025
Page views
2
  • Identification
  • Scope
  • Coverage
  • Producers and sponsors
  • Sampling
  • Survey instrument
  • Data collection
  • Study activities
  • Access policy
  • Data Access
  • Contacts
  • Metadata production

    • Identification

    Survey ID number

    FRESH-PEF69-en
    Title

    Rhône Alpes birth defects registry
    Abbreviation or Acronym

    REMERA
    Country
    Name Country code
    France fr
    Kind of Data

    ['Clinical data','Participant-reported health data','Biological data','Socio-demographic data','Paraclinical data (non-biological) : Anthropometry']
    Unit of Analysis

    Individuals

    Scope

    Topics
    Topic Vocabulary
    Gynaecology and obstetrics health theme
    Paediatrics health theme
    Anencephaly or similar anomalies cim-11
    Structural developmental anomalies of eyelid, lacrimal apparatus or orbit cim-11
    Structural developmental anomaly of heart or great vessels cim-11
    Structural developmental anomalies of the nose or cavum cim-11
    Developmental anomalies cim-11
    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
    Environmental determinants: Other health determinant
    Behavioral determinants health determinant
    Behavioral determinants: Eating habits health determinant
    Environmental determinants health determinant
    Socio-demographic and economic determinants: Employment health determinant
    Biological determinants health determinant
    Healthcare system determinants health determinant
    Keywords
    prevalence of congenital malformations reprotoxic risk factors antenatal screening eugenic abortions perinatality database on malformations epidemiology follow-up alert teratogens genetics

    Coverage

    Geographic Coverage

    ['Auvergne Rhône-Alpes']
    Universe

    {
    "level_sex_clusion_I": [
    {
    "value": "Male",
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D008297"
    }
    },
    {
    "value": "Female",
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D005260"
    }
    },
    {
    "value": "Other",
    "concept": {
    "vocab": [],
    "vocabURI": []
    }
    }
    ],
    "level_age_clusion_I": [
    {
    "value": "Infant, Newborn (birth to 28 days)",
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D007231"
    }
    },
    {
    "value": "Infant (28 days to 2 years)",
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D007223"
    }
    }
    ],
    "level_type_clusion_I": "People with disabilities",
    "level_type_clusion_other": "",
    "clusion_I": "",
    "clusion_E": ""
    }

    Producers and sponsors

    Primary investigators
    Name
    Emmanuelle;AMAR
    Producers
    Name
    REGISTRE DES MALFORMATIONS EN RHONE ALPES (REMERA)
    Funding Agency/Sponsor
    Name
    AGENCE NATIONALE DE SECURITE DU MEDICAMENT ET DES PRODUITS DE SANTE (ANSM)
    INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE (INSERM)
    REGION AUVERGNE RHÔNE ALPES
    SANTE PUBLIQUE FRANCE

    Sampling

    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
    1973-01-01
    Mode of data collection
    • {"concept":{"vocabURI":"Transcription","vocab":"CESSDA"},"value":"Converting or copying information into a structured record"}

    Study activities

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

    Access policy

    Completeness of Study Stored

    Data depersonalized

    Data Access

    Access conditions

    Access to the data (depersonalized) is possible, on request
    Availability Status

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

    Contacts

    Contacts
    Name Email
    Emmanuelle;AMAR emmanuelle.amar@remera.fr

    Metadata production

    DDI Document ID

    FRESH-PEF69-en
    Back to Catalog