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<docDscr>
  <citation>
    <titlStmt>
      <titl>Youg Onset Dementia</titl>
      <IDNo>FRESH-PEF5391-en</IDNo>
    </titlStmt>
    <prodStmt>
      <producer abbr="" affiliation="UNIVERSITE DE LILLE" role="">Florence PASQUIER</producer>
    </prodStmt>
    <verStmt>
      <version></version>
    </verStmt>
  </citation>
</docDscr>
<stdyDscr>
  <citation>
    <titlStmt>
      <titl>
                Youg Onset Dementia            </titl>
      <altTitl>
                    YOD                </altTitl>
      <IDNo agency="FReSH-lang">
                FRESH-PEF5391-en            </IDNo>
      <IDNo agency="PEF">
                    5391                </IDNo>
      <IDNo agency="FReSH">
                    FRESH-PEF5391                </IDNo>
    </titlStmt>
    <rspStmt>
      <AuthEnty>
                    Florence RICHARD                                                                                                                            </AuthEnty>
      <AuthEnty affiliation="UNIVERSITE DE LILLE">
        <ExtLink title="ROR" URI="https://ror.org/02kzqn938" role="organisation id"/>
        <ExtLink title="SIREN" URI="130029754" role="organisation id"/>
      </AuthEnty>
      <AuthEnty>
                    Florence PASQUIER                                                                                                                            </AuthEnty>
      <AuthEnty affiliation="UNIVERSITE DE LILLE">
        <ExtLink title="ROR" URI="https://ror.org/02kzqn938" role="organisation id"/>
        <ExtLink title="SIREN" URI="130029754" role="organisation id"/>
      </AuthEnty>
      <othId affiliation="" type="">
                                    </othId>
    </rspStmt>
    <prodStmt>
      <producer role="sponsor">
                                            UNIVERSITE DE LILLE                    
                                    </producer>
      <producer role="sponsor">
                                            CENTRE HOSPITALIER UNIVERSITAIRE DE LILLE (CHU)                    
                                    </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="UNIVERSITE DE LILLE" email="florence.richard@pasteur-lille.fr">
                    Florence;RICHARD
                                            <ExtLink title="ROR" URI="https://ror.org/02kzqn938" role="organisation id"/>
                                            <ExtLink title="SIREN" URI="130029754" role="organisation id"/>
                                    </contact>
      <contact affiliation="UNIVERSITE DE LILLE" email="florence.pasquier@chru-lille.fr">
                    Florence;PASQUIER
                                            <ExtLink title="ROR" URI="https://ror.org/02kzqn938" role="organisation id"/>
                                            <ExtLink title="SIREN" URI="130029754" 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="">
                    Dementia</keyword>
      <keyword vocab="" vocabURI="">
                    Alzheimer's disease</keyword>
      <keyword vocab="" vocabURI="">
                    Frontotemporal dementia</keyword>
      <keyword vocab="" vocabURI="">
                    Vascular dementia</keyword>
      <keyword vocab="" vocabURI="">
                    Dementia with Lewy bodies</keyword>
      <keyword vocab="" vocabURI="">
                    Early Onset</keyword>
      <keyword vocab="" vocabURI="">
                    Pronostic factors</keyword>
      <keyword vocab="" vocabURI="">
                    Social impact</keyword>
      <keyword vocab="" vocabURI="">
                    Medical pathway</keyword>
      <keyword vocab="" vocabURI="">
                    genetics</keyword>
      <topcClas vocab="health theme">
                        Paediatrics                                                        <ExtLink title="ESV" URI="http://data.europa.eu/8mn/euroscivoc/bf8aaaac-ddee-41cd-bb8a-c5a63de3fcbd"/>
                                                            <ExtLink title="MeSH" URI="http://id.nlm.nih.gov/mesh/D010372"/>
                                                </topcClas>
      <topcClas vocab="health theme">
                        Psychiatry                                                        <ExtLink title="ESV" URI="http://data.europa.eu/8mn/euroscivoc/3de50dee-da1c-4791-a386-56bca24a5fed"/>
                                                            <ExtLink title="MeSH" URI="http://id.nlm.nih.gov/mesh/D011570"/>
                                                </topcClas>
      <topcClas vocab="health determinant">
                        Socio-demographic and economic determinants                    </topcClas>
    </subject>
    <abstract contentType="purpose">Collect of medical, medicosocial, economic, neuropsychological,biological and imaging information in young patients consulting at CNR-MAJ, with follow-up every 6 months until death. If specific consent has been granted, an autopsy for neuropathological confirmation of the diagnosis will be performed. Primary objective - To determine the diagnostic and medicosocial pathways followed by young patients suffering from early onset dementia Secondary objectives - To evaluate factors associated with diagnostic delay - To constitute clinical, imaging and biological resources for this dementia occuring in young subjects.</abstract>
    <abstract contentType="abstract">null</abstract>
    <sumDscr>
      <collDate event="start" date="2009-01-01"/>
      <nation abbr="fr">
                    France
                                            <concept vocab="ISO" vocabURI="fr"/>
                                    </nation>
      <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">Adult (25 to 44 years)                                                            <concept vocab="MeSH" vocabURI="http://id.nlm.nih.gov/mesh/D000328"/>
                                                    </universe>
      <universe level="age" clusion="I">Middle Aged (45 to 64 years)                                                            <concept vocab="MeSH" vocabURI="http://id.nlm.nih.gov/mesh/D008875"/>
                                                    </universe>
      <universe level="age" clusion="I">Aged (65 to 79 years)                                                            <concept vocab="MeSH" vocabURI="http://id.nlm.nih.gov/mesh/D000368"/>
                                                    </universe>
      <universe clusion="I">volunteer patients referred to the CNR-MAJ (Lille-Rouen-Paris Salpêtrière) for a dementia syndrome begining before age 60.                    </universe>
      <dataKind>Clinical data</dataKind>
      <dataKind>Participant-reported health data</dataKind>
      <dataKind>Biological data</dataKind>
      <dataKind>Socio-demographic data</dataKind>
      <dataKind>Paraclinical data (non-biological) : Imaging</dataKind>
    </sumDscr>
  </stdyInfo>
  <studyDevelopment>
    <developmentActivity type="primary evaluation">
      <description>Health event/morbidity
Health event/mortality
Others</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>
    <notes subject="observational study method">
                        Morbidity registry                    </notes>
    <anlyInfo>
      <respRate>338 (dont/with 220 Alzheimer)</respRate>
    </anlyInfo>
    <stdyClas>Unknown</stdyClas>
  </method>
  <dataAccs>
    <setAvail>
      <avlStatus>
                            To be defined                                                    </avlStatus>
    </setAvail>
  </dataAccs>
  <othrStdyMat>
    <relMat>Access on specific project only</relMat>
  </othrStdyMat>
</stdyDscr>
<dataDscr>
</dataDscr></codeBook>
