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        <titl xml:lang="FR">Étude longitudinale des variants des gènes BRCA1 et BRCA2</titl>
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        <altTitl xml:lang="FR">BRCA Share</altTitl>
        <altTitl xml:lang="EN">BRCA Share</altTitl>
        <parTitl xml:lang="EN">Longitudinal study of variants of BRCA1 and BRCA2 genes</parTitl>
        <IDNo>PEF33456</IDNo>
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        <AuthEnty affiliation="ITMO Santé Publique, Aviesan">Portail Épidémiologie-France</AuthEnty>
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        <copyright>Portail Épidémiologie-France 2026</copyright>
        <prodDate date="2026-04-06">06/04/2026</prodDate>
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        <contact email="portail-epidemiologie@inserm.fr">Portail Epidemiologie-France</contact>
        <depositr>Dominique Stoppa-Lyonnet</depositr>
        <depDate xml:lang="FR">04/03/2015</depDate>
        <depDate xml:lang="EN">12/09/2017</depDate>
        <distDate>12/09/2017</distDate>
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        <version xml:lang="FR" date="12/09/2017">2</version>
        <version xml:lang="EN" date="12/09/2017">1</version>
        <verResp>Dominique Stoppa-Lyonnet</verResp>
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        <titl xml:lang="FR">Étude longitudinale des variants des gènes BRCA1 et BRCA2</titl>
        <subTitl/>
        <altTitl xml:lang="FR">BRCA Share</altTitl>
        <altTitl xml:lang="EN">BRCA Share</altTitl>
        <parTitl xml:lang="EN">Longitudinal study of variants of BRCA1 and BRCA2 genes</parTitl>
        <IDNo/>
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        <AuthEnty affiliation="Institut">Dominique Stoppa-Lyonnet</AuthEnty>
        <AuthEnty affiliation="Institut">Sandrine Caputo</AuthEnty>
        <othId xml:lang="FR">Consortiums ENIGMA et le BRCA challenge de la « Global alliance for Genomics and health »</othId>
        <othId xml:lang="EN">ENIGMA Consortiums and the BRCA Challenge of the "Global Alliance for Genomics and Health"</othId>
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        <prodPlac>Service de génétique - Institut - 26 rue d'ULM 
75248 Paris</prodPlac>
        <prodPlac>Service de Génétique - Institut - 26 rue d'ULM 
75248 Paris</prodPlac>
        <software/>
        <fundAg xml:lang="FR" role="Mixte"> Quest Diagnostics, l'Inserm et, le GGC d’UNICANCER et les 5 CHUs associés,appuyés par Inserm Transfert</fundAg>
        <fundAg xml:lang="EN" role="Mixed">Quest Diagnostics, Inserm and the UNICANCER GGC and the associated 5 university hospitals (CHUs), supported by Inserm Transfert</fundAg>
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      <distStmt>
        <distrbtr>Institut</distrbtr>
        <distrbtr>Institut</distrbtr>
        <contact affiliation="Institut" email="dominique.stoppa-lyonnet@curie.fr">Dominique Stoppa-Lyonnet</contact>
        <contact affiliation="Institut" email="sandrine.caputo@curie.fr">Sandrine Caputo</contact>
        <depositr>Dominique Stoppa-Lyonnet</depositr>
        <depDate xml:lang="FR">04/03/2015</depDate>
        <depDate xml:lang="EN">12/09/2017</depDate>
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        <distDate xml:lang="EN">12/09/2017</distDate>
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        <verResp>Dominique Stoppa-Lyonnet</verResp>
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    <studyAuthorization>
      <authorizingAgency/>
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    <stdyInfo>
      <studyBudget/>
      <subject>
        <keyword xml:lang="FR">BRCA1</keyword>
        <keyword xml:lang="FR">BRCA2</keyword>
        <keyword xml:lang="FR">ovaire</keyword>
        <keyword xml:lang="FR">cancer</keyword>
        <keyword xml:lang="FR">sein</keyword>
        <keyword xml:lang="FR">mutation</keyword>
        <keyword xml:lang="FR">base clinico-biologique</keyword>
        <keyword xml:lang="EN">ovary</keyword>
        <keyword xml:lang="EN">clinical and biological database</keyword>
        <keyword xml:lang="EN">BRCA1</keyword>
        <keyword xml:lang="EN">BRCA2</keyword>
        <keyword xml:lang="EN">cancer</keyword>
        <keyword xml:lang="EN">breast</keyword>
        <keyword xml:lang="EN">mutation</keyword>
        <topcClas xml:lang="FR">Cancérologie</topcClas>
        <topcClas xml:lang="FR">Maladies rares</topcClas>
        <topcClas xml:lang="EN">Cancer research</topcClas>
        <topcClas xml:lang="EN">Rare diseases</topcClas>
        <topcClas xml:lang="FR">Génétique</topcClas>
        <topcClas xml:lang="EN">Genetic</topcClas>
      </subject>
      <abstract xml:lang="FR">Objectif de la base de données : L'objectif de BRCA Share™ est d'accélérer la recherche sur les mutations des gènes BRCA, particulièrement sur les variants de signification inconnue, pour améliorer les capacités de diagnostic et d’identification des personnes susceptibles de développer un cancer du sein ou de l’ovaire.</abstract>
      <abstract xml:lang="EN">Database objective : The purpose of BRCA Share™ is to accelerate research on BRCA gene mutations, particularly on the variants of unknown significance, in order to improve the ability to diagnose and identify individuals predisposed to developing breast or ovarian cancer.</abstract>
      <sumDscr>
        <timePrd/>
        <collDate event="start">2000</collDate>
        <collDate event="end"/>
        <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">Patients porteurs de mutations des gènes BRCA1 et BRCA2 consultant dans un centre participant</universe>
        <universe xml:lang="EN" clusion="I">Patients with BRCA1 and BRCA2 gene mutations presenting at a participating centre</universe>
        <universe xml:lang="FR">Nombre d'individus : 16015</universe>
        <universe xml:lang="EN">Number of individuals: 16015</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">Adulte (19 à 24 ans)</universe>
        <universe xml:lang="FR" level="Tranche d'âge">Adulte (25 à 44 ans)</universe>
        <universe xml:lang="FR" level="Tranche d'âge">Adulte (45 à 64 ans)</universe>
        <universe xml:lang="FR" level="Tranche d'âge">Personnes âgées (65 à 79 ans)</universe>
        <universe xml:lang="FR" level="Tranche d'âge">Grand âge (80 ans et plus)</universe>
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        <universe xml:lang="EN" level="Age range">Adulthood (25 to 44 years)</universe>
        <universe xml:lang="EN" level="Age range">Adulthood (45 to 64 years)</universe>
        <universe xml:lang="EN" level="Age range">Elderly (65 to 79 years)</universe>
        <universe xml:lang="EN" level="Age range">Great age (80 years and more)</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="Pathologie"/>
        <universe xml:lang="EN" level="Pathology"/>
        <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 longitudinales (hors cohortes)</dataKind>
        <dataKind xml:lang="EN">Longitudinal study (except cohorts)</dataKind>
        <dataKind xml:lang="FR">Données cliniques : Données familiales recueillies auprès des consultants de génétique</dataKind>
        <dataKind xml:lang="EN">Clinical data: Family data collected from genetics appointments</dataKind>
        <dataKind xml:lang="FR">ADN</dataKind>
        <dataKind xml:lang="EN">DNA</dataKind>
        <dataKind xml:lang="FR"/>
        <dataKind xml:lang="EN"/>
        <dataKind xml:lang="FR">Evénements de santé/morbidité</dataKind>
        <dataKind xml:lang="FR">Evénements de santé/mortalité</dataKind>
        <dataKind xml:lang="EN">Health event/morbidity</dataKind>
        <dataKind xml:lang="EN">Health event/mortality</dataKind>
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        <dataKind xml:lang="EN"/>
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        <dataCollector affiliation="Institut">Sandrine Caputo</dataCollector>
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