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Development of an Early Diagnosis Tool for Behcet's Disease in Childhood for International Epidemiological Studies and the Formation of a DNA Bank

France, United Kingdom, Italy...and 8 more, 2008 - 2012
Reference ID
FRESH-PEF60194-en
Producer(s)
Isabelle;KONE-PAUT, Martha;DARCE-BELLO, Tu-Anh;TRAN
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
  • Data Access
  • Contacts
  • Metadata production

    • Identification

    Survey ID number

    FRESH-PEF60194-en
    Title

    Development of an Early Diagnosis Tool for Behcet's Disease in Childhood for International Epidemiological Studies and the Formation of a DNA Bank
    Abbreviation or Acronym

    PED-BD
    Country
    Name Country code
    France fr
    United Kingdom gb
    Italy it
    Switzerland ch
    Germany de
    Japan jp
    Saudi Arabia sa
    Iran, Islamic Republic of ir
    Turkey tr
    Egypt eg
    Morocco ma
    Kind of Data

    ['Clinical data','Participant-reported health data']
    Unit of Analysis

    Individuals

    Scope

    Topics
    Topic Vocabulary
    Internal medicine health theme
    Paediatrics health theme
    Arrhythmogenic ventricular cardiomyopathy cim-11
    Biological determinants: Genetic predisposition health determinant
    Biological determinants health determinant
    Keywords
    symptoms Recurrent oral aphthosis (ROA) genital ulceration (GU) erythema nodosum folliculitis pustulous/acneiform lesions positive pathergy test uveitis venous/arterial thrombosis

    Coverage

    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"
    }
    }
    ],
    "level_age_clusion_I": [
    {
    "value": "Child (6 to 12 years)",
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D002648"
    }
    }
    ],
    "level_type_clusion_I": "Patients population",
    "level_type_clusion_other": "",
    "clusion_I": "",
    "clusion_E": ""
    }

    Producers and sponsors

    Primary investigators
    Name
    Isabelle;KONE-PAUT
    Martha;DARCE-BELLO
    Tu-Anh;TRAN
    Producers
    Name
    ASSISTANCE PUBLIQUE HOPITAUX DE PARIS (AP-HP)
    Funding Agency/Sponsor
    Name
    ASSISTANCE PUBLIQUE HOPITAUX DE PARIS (AP-HP)
    MINISTERE DU TRAVAIL, DE LA SANTE, DES SOLIDARITES ET DES FAMILLES

    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
    2008-01-01 2012-01-01
    Mode of data collection
    • {"concept":{"vocabURI":"Interview","vocab":"CESSDA"},"value":"Interview with the participant (including clinical)"}

    Study activities

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

    Data Access

    Availability Status

    {"value":"Restricted access","extLink":[{"title":"COAR","uri":"http://purl.org/coar/access_right/c_16ec"}]}
    Restrictions
    • Data may be used by academic teams; - To be decided if data may be used by industrial teams.
    Notes

    the survey questionnaire

    Contacts

    Contacts
    Name Email
    Isabelle;KONE-PAUT isabelle.kone-paut@aphp.fr
    Martha;DARCE-BELLO martha.darce@aphp.fr
    Tu-Anh;TRAN tu.anh.tran@chu-nimes.fr

    Metadata production

    DDI Document ID

    FRESH-PEF60194-en
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