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        <titl xml:lang="FR">Cohorte d'enfants polyhandicapés pour un suivi prospectif à long terme</titl>
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        <parTitl xml:lang="EN">Cohort of Children with Multiple Disabilities: Long-Term Prospective Outcomes</parTitl>
        <IDNo>PEF73221</IDNo>
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        <copyright>Portail Épidémiologie-France 2026</copyright>
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        <distrbtr>Portail Épidémiologie-France</distrbtr>
        <contact email="portail-epidemiologie@inserm.fr">Portail Epidemiologie-France</contact>
        <depositr>Thierry  BILLETTE DE VILLEMEUR</depositr>
        <depDate xml:lang="FR">09/09/2015</depDate>
        <depDate xml:lang="EN">29/06/2016</depDate>
        <distDate>09/09/2015</distDate>
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        <verResp>Thierry  BILLETTE DE VILLEMEUR</verResp>
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      <holdings xml:lang="EN" location="Portail Epidemiologie-France" URI="http://admin-epid-prod2.inserm.fr/en/content/view/full/88574">Cohort of Children with Multiple Disabilities: Long-Term Prospective Outcomes</holdings>
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    <citation>
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        <titl xml:lang="FR">Cohorte d'enfants polyhandicapés pour un suivi prospectif à long terme</titl>
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        <altTitl xml:lang="EN"/>
        <parTitl xml:lang="EN">Cohort of Children with Multiple Disabilities: Long-Term Prospective Outcomes</parTitl>
        <IDNo/>
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        <AuthEnty affiliation="AP-HP Federation for Multiple Disabilities, Trousseau Hospital, Paris Public Hospitals (AP-HP)">Thierry  Billette de Villemeur </AuthEnty>
      </rspStmt>
      <prodStmt>
        <producer role="Public">AP-HP Federation for Multiple Disabilities, Trousseau Hospital, Paris Public Hospitals (AP-HP)</producer>
        <copyright/>
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        <prodPlac> - AP-HP Federation for Multiple Disabilities, Trousseau Hospital, Paris Public Hospitals (AP-HP) - </prodPlac>
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        <fundAg xml:lang="FR" role="Publique">Fédération du Polyhandicap de l’AP-HP</fundAg>
        <fundAg xml:lang="EN" role="Public">AP-HP Federation for Multiple Disabilities</fundAg>
        <grantNo/>
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        <distrbtr>AP-HP Federation for Multiple Disabilities, Trousseau Hospital, Paris Public Hospitals (AP-HP)</distrbtr>
        <contact affiliation="AP-HP Federation for Multiple Disabilities, Trousseau Hospital, Paris Public Hospitals (AP-HP)" email="thierry.billette@trs.aphp.fr">Thierry  Billette de Villemeur </contact>
        <depositr>Thierry  BILLETTE DE VILLEMEUR</depositr>
        <depDate xml:lang="FR">09/09/2015</depDate>
        <depDate xml:lang="EN">29/06/2016</depDate>
        <distDate xml:lang="FR">09/09/2015</distDate>
        <distDate xml:lang="EN">29/06/2016</distDate>
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      <authorizationStatement xml:lang="EN">CNIL</authorizationStatement>
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      <subject>
        <keyword xml:lang="FR">Polyhandicap</keyword>
        <keyword xml:lang="FR">soins</keyword>
        <keyword xml:lang="FR">enfants</keyword>
        <keyword xml:lang="FR">qualité de vie</keyword>
        <keyword xml:lang="EN">multiple disabilities</keyword>
        <keyword xml:lang="EN">care</keyword>
        <keyword xml:lang="EN">children</keyword>
        <keyword xml:lang="EN">quality of life</keyword>
        <topcClas xml:lang="FR">Déficiences et handicaps</topcClas>
        <topcClas xml:lang="FR">Pédiatrie</topcClas>
        <topcClas xml:lang="EN">Disability/handicap</topcClas>
        <topcClas xml:lang="EN">Pediatrics</topcClas>
        <topcClas xml:lang="FR">Facteurs sociaux et psycho-sociaux</topcClas>
        <topcClas xml:lang="FR">Mode de vie et comportements</topcClas>
        <topcClas xml:lang="FR">Produits de santé</topcClas>
        <topcClas xml:lang="FR">Systèmes de soins et accès aux soins</topcClas>
        <topcClas xml:lang="EN">Social and psychosocial factors</topcClas>
        <topcClas xml:lang="EN">Lifestyle and behavior</topcClas>
        <topcClas xml:lang="EN">Medicine</topcClas>
        <topcClas xml:lang="EN">Healthcare system and access to health care services</topcClas>
      </subject>
      <abstract xml:lang="FR">Objectif de la base de données : L'objectif de la cohorte est la caractérisation du Polyhandicap (Goupes de sévérité du Polyhandicap, lourdeur des soins, qualité de vie) et la description de l’histoire naturelle du Polyhandicap</abstract>
      <abstract xml:lang="EN">Database objective : The aim of this cohort is to characterise multiple disabilities (groups according to multiple disability severity, burden of care and quality of life) and to describe the natural history of multiple disabilities.</abstract>
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        <timePrd/>
        <collDate event="start">2006</collDate>
        <collDate event="end">2016</collDate>
        <collDate xml:lang="FR">Collecte des données active</collDate>
        <collDate xml:lang="EN">Current data collection</collDate>
        <nation>France</nation>
        <geogCover xml:lang="FR">France</geogCover>
        <geogCover xml:lang="EN">France</geogCover>
        <geogUnit>National</geogUnit>
        <anlyUnit xml:lang="fr">individuel
                </anlyUnit>
        <anlyUnit xml:lang="en">individuals
                </anlyUnit>
        <universe xml:lang="FR" clusion="I">Enfants polyhandicapés</universe>
        <universe xml:lang="EN" clusion="I">Children with multiple disabilities.</universe>
        <universe xml:lang="FR">Nombre d'individus : 1200</universe>
        <universe xml:lang="EN">Number of individuals: 1,200</universe>
        <universe xml:lang="FR">Recrutement via une sélection de services ou établissements de santé</universe>
        <universe xml:lang="EN">Recruiting through a selection of health institutions and services</universe>
        <universe xml:lang="FR" level="Tranche d'âge">Enfance (6 à 13 ans)</universe>
        <universe xml:lang="EN" level="Age range">Childhood (6 to 13 years)</universe>
        <universe xml:lang="FR" level="Type de population">Sujets malades</universe>
        <universe xml:lang="EN" level="Population type">Sick population</universe>
        <universe xml:lang="FR" level="Sexe">Masculin</universe>
        <universe xml:lang="FR" level="Sexe">Féminin</universe>
        <universe xml:lang="EN" level="Sex">Male</universe>
        <universe xml:lang="EN" level="Sex">Female</universe>
        <dataKind xml:lang="FR">Bases de données issues d’enquêtes</dataKind>
        <dataKind xml:lang="EN">Study databases</dataKind>
        <dataKind xml:lang="FR">Etudes de cohortes</dataKind>
        <dataKind xml:lang="EN">Cohort study</dataKind>
        <dataKind xml:lang="FR">Données cliniques : sévérité, complexité des handicaps intriqués, instabilité, évolutivité, pronostic</dataKind>
        <dataKind xml:lang="EN">Clinical data: severity; complexity of interrelated disabilities; instability; scalability; prognosis</dataKind>
        <dataKind xml:lang="FR">Evénements de santé/morbidité</dataKind>
        <dataKind xml:lang="FR">Consommation de soins/services de santé</dataKind>
        <dataKind xml:lang="FR">Qualité de vie/santé perçue</dataKind>
        <dataKind xml:lang="EN">Health event/morbidity</dataKind>
        <dataKind xml:lang="EN">Health care consumption and services</dataKind>
        <dataKind xml:lang="EN">Quality of life/health perception</dataKind>
        <dataKind xml:lang="FR">Consultations (médicales/paramédicales)</dataKind>
        <dataKind xml:lang="EN">Medical/paramedical consultation</dataKind>
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        <timeMeth method="http://www.ddialliance.org/Specification/DDI-CV/TimeMethod_1.2_Genericode1.0_DDI-CVProfile1.0.xml">Longitudinal: Cohort/Event-based</timeMeth>
        <dataCollector affiliation="AP-HP Federation for Multiple Disabilities, Trousseau Hospital, Paris Public Hospitals (AP-HP)">Thierry  Billette de Villemeur </dataCollector>
        <collectorTraining/>
        <frequenc xml:lang="FR">Recueil de données une fois par an et analyse à 3, 5 et 10 ans</frequenc>
        <frequenc xml:lang="EN">Data gathered annually and analysed at 3, 5 and 10 years.</frequenc>
        <sampProc xml:lang="FR">Neuropédiatrie (100 enfants), SSR spécialisés (200 enfants), Médico-social (900 enfants)</sampProc>
        <sampProc xml:lang="EN">Neuropaediatrics (100 children), specialised SSR (Soins de suite et de réadaptation [Follow-up care and rehabilitation]) (200 children), medical and social care (900 children)</sampProc>
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        <collMode xml:lang="FR">Dossier clinique : sévérité, complexité des handicaps intriqués, instabilité, évolutivité, pronostic</collMode>
        <collMode xml:lang="EN">Direct physical measures: severity; complexity of interrelated disabilities; instability; scalability; prognosis</collMode>
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        <collMode xml:lang="FR"/>
        <collMode xml:lang="EN"/>
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        <restrctn xml:lang="EN">Contact the scientist in charge.</restrctn>
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        <conditions xml:lang="EN">Contact the scientist in charge.</conditions>
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      <relPubl xml:lang="FR">http://admin-epid-prod2.inserm.fr/en/content/download/92087/3674498/version/1/file/présentation de Thierry BILLETTE DE VILLEMEUR- Cohorte polyhandicap.pdf</relPubl>
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