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<docDscr>
  <citation>
    <titlStmt>
      <titl>Auvergne-Loire observatory on chronic inflammatory diseases of the musculoskeletal system occurring in childhood - Arthrites Juvéniles Idiopathiques cohort (long-term follow-up of children with juvenile idiopathic arthritis)</titl>
      <IDNo>FRESH-PEF5222-en</IDNo>
    </titlStmt>
    <prodStmt>
      <producer abbr="" affiliation="CENTRE HOSPITALIER UNIVERSITAIRE DE CLERMONT-FERRAND" role="">Aurélie CHAUSSET</producer>
    </prodStmt>
    <verStmt>
      <version></version>
    </verStmt>
  </citation>
</docDscr>
<stdyDscr>
  <citation>
    <titlStmt>
      <titl>
                Auvergne-Loire observatory on chronic inflammatory diseases of the musculoskeletal system occurring in childhood - Arthrites Juvéniles Idiopathiques cohort (long-term follow-up of children with juvenile idiopathic arthritis)            </titl>
      <altTitl>
                    APICALE-AJI                </altTitl>
      <IDNo agency="FReSH-lang">
                FRESH-PEF5222-en            </IDNo>
      <IDNo agency="PEF">
                    5222                </IDNo>
      <IDNo agency="FReSH">
                    FRESH-PEF5222                </IDNo>
    </titlStmt>
    <rspStmt>
      <AuthEnty>
                    Aurélie CHAUSSET                                                                                                                            </AuthEnty>
      <AuthEnty affiliation="CENTRE HOSPITALIER UNIVERSITAIRE DE CLERMONT-FERRAND">
        <ExtLink title="ROR" URI="https://ror.org/02tcf7a68" role="organisation id"/>
        <ExtLink title="SIREN" URI="266307461" role="organisation id"/>
      </AuthEnty>
      <AuthEnty>
                    Etienne MERLIN                                                                                                                            </AuthEnty>
      <AuthEnty affiliation="CENTRE HOSPITALIER UNIVERSITAIRE DE CLERMONT-FERRAND">
        <ExtLink title="ROR" URI="https://ror.org/02tcf7a68" role="organisation id"/>
        <ExtLink title="SIREN" URI="266307461" role="organisation id"/>
      </AuthEnty>
      <othId affiliation="" type="">
                                    </othId>
    </rspStmt>
    <prodStmt>
      <producer role="sponsor">
                                            INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE (INSERM)                    
                                    </producer>
      <producer role="sponsor">
                                            CENTRE HOSPITALIER UNIVERSITAIRE DE CLERMONT-FERRAND                    
                                    </producer>
      <prodPlac>
                Epidemiology France Portal (PEF)            </prodPlac>
      <fundAg>
                                            MINISTERE DU TRAVAIL, DE LA SANTE, DES SOLIDARITES ET DES FAMILLES                    
                                    </fundAg>
    </prodStmt>
    <distStmt>
      <distrbtr abbr="null">
                    null</distrbtr>
      <contact affiliation="CENTRE HOSPITALIER UNIVERSITAIRE DE CLERMONT-FERRAND" email="achausset@chu-clermontferrand.fr">
                    Aurélie;CHAUSSET
                                            <ExtLink title="ROR" URI="https://ror.org/02tcf7a68" role="organisation id"/>
                                            <ExtLink title="SIREN" URI="266307461" role="organisation id"/>
                                    </contact>
      <contact affiliation="CENTRE HOSPITALIER UNIVERSITAIRE DE CLERMONT-FERRAND" email="e_merlin@chu-clermontferrand.fr">
                    Etienne;MERLIN
                                            <ExtLink title="ROR" URI="https://ror.org/02tcf7a68" role="organisation id"/>
                                            <ExtLink title="SIREN" URI="266307461" role="organisation id"/>
                                    </contact>
      <depDate date="2026-06-16"/>
      <distDate date="2026-06-16"/>
    </distStmt>
    <biblCit format="">
            </biblCit>
    <holdings URI="null"/>
    <notes> </notes>
  </citation>
  <stdyInfo>
    <studyBudget/>
    <subject>
      <keyword vocab="" vocabURI="">
                    Very long-term progression of children with Juvenile Idiopathic Arthritis (AJI)</keyword>
      <keyword vocab="" vocabURI="">
                    transition period</keyword>
      <keyword vocab="" vocabURI="">
                    joint disease</keyword>
      <keyword vocab="" vocabURI="">
                    repercussions</keyword>
      <topcClas vocab="health theme">
                        Rheumatology                                                        <ExtLink title="ESV" URI="http://data.europa.eu/8mn/euroscivoc/bfb0bafd-7894-45ba-84fc-ddab5fd6c537"/>
                                                            <ExtLink title="MeSH" URI="http://id.nlm.nih.gov/mesh/D012219"/>
                                                </topcClas>
      <topcClas vocab="cim-11">
                        Diseases of the musculoskeletal system or connective tissue                                            </topcClas>
      <topcClas vocab="health determinant">
                        Environmental determinants: Climate                    </topcClas>
      <topcClas vocab="health determinant">
                        Environmental determinants                    </topcClas>
    </subject>
    <abstract contentType="purpose">The primary objective of this project is to describe the very long-term progression of Juvenile Idiopathic Arthritis (AJI) in children, from onset of the disease until adulthood that extends past the transition period. The follow-up will particular focus on joint disease activity as well as very long-term repercussions.- The secondary objectives will be to provide data relating to treatment effectiveness and tolerance, especially concerning the outcome for children intolerant to methotrexate and the monitoring children in biotherapy. - This follow-up will also aid articulation between research and practice by proposing further studies in 3 areas: o nursing research and therapeutic education o study of bone microarchitecture o study of endothelial function and vascular abnormalities</abstract>
    <abstract contentType="abstract">null</abstract>
    <sumDscr>
      <collDate event="start" date="2011-01-01"/>
      <nation abbr="fr">
                    France
                                            <concept vocab="ISO" vocabURI="fr"/>
                                    </nation>
      <geogCover>Auvergne Rhône-Alpes</geogCover>
      <geogUnit/>
      <anlyUnit>
                Individuals            </anlyUnit>
      <universe level="type" clusion="I">Patients population                    </universe>
      <universe level="sex" clusion="I">Male                                                            <concept vocab="MeSH" vocabURI="http://id.nlm.nih.gov/mesh/D008297"/>
                                                    </universe>
      <universe level="sex" clusion="I">Female                                                            <concept vocab="MeSH" vocabURI="http://id.nlm.nih.gov/mesh/D005260"/>
                                                    </universe>
      <universe level="age" clusion="I">Child, Preschool (2 to 5 years)                                                            <concept vocab="MeSH" vocabURI="http://id.nlm.nih.gov/mesh/D002675"/>
                                                    </universe>
      <universe level="age" clusion="I">Child (6 to 12 years)                                                            <concept vocab="MeSH" vocabURI="http://id.nlm.nih.gov/mesh/D002648"/>
                                                    </universe>
      <universe clusion="I">Children with Juvenile Idiopathic Arthritis (AJI) from the Auvergne-Loire region                    </universe>
      <dataKind>Clinical data</dataKind>
      <dataKind>Participant-reported health data</dataKind>
      <dataKind>Biological data</dataKind>
    </sumDscr>
  </stdyInfo>
  <studyDevelopment>
    <developmentActivity type="primary evaluation">
      <description>Health event/morbidity
Health event/mortality
Health care consumption and services</description>
    </developmentActivity>
  </studyDevelopment>
  <method>
    <dataColl>
      <sampProc>Other                                                            <concept vocab="CESSDA" vocabURI="Other"/>
                                                    </sampProc>
      <sampleFrame>
        <frameUnit>
          <unitType>Through organizations (health services or institutions</unitType>
        </frameUnit>
        <frameUnit>
          <unitType>schools</unitType>
        </frameUnit>
        <frameUnit>
          <unitType>businesses</unitType>
        </frameUnit>
        <frameUnit>
          <unitType>etc.)</unitType>
        </frameUnit>
      </sampleFrame>
      <targetSampleSize>
        <sampleSizeFormula>&lt; 500 individuals                        </sampleSizeFormula>
      </targetSampleSize>
      <collMode>Converting or copying information into a structured record                                                            <concept vocab="CESSDA" vocabURI="Transcription"/>
                                                    </collMode>
    </dataColl>
    <notes>Observational Study</notes>
    <notes subject="research type">
                        Observational Study                    </notes>
    <anlyInfo>
      <respRate>165 (08/2014)</respRate>
    </anlyInfo>
    <stdyClas>Unknown</stdyClas>
  </method>
  <dataAccs>
    <setAvail>
      <avlStatus>
                            Restricted access                                                    </avlStatus>
    </setAvail>
  </dataAccs>
  <othrStdyMat>
    <relMat>Access on specific project only</relMat>
  </othrStdyMat>
</stdyDscr>
<dataDscr>
</dataDscr></codeBook>
