{"doc_desc":{"title":"Registre National des Tumeurs Solides de l'Enfant (registre qualifi\u00e9 2015-2020)","idno":"FRESH-PEF64-fr","producers":[{"name":"Brigitte LACOUR","affiliation":"CENTRE HOSPITALIER REGIONAL ET UNIVERSITAIRE DE NANCY"}]},"study_desc":{"title_statement":{"idno":"FRESH-PEF64-fr","IDno":{"metadata_no":[{"agency":"PEF","code":"64"},{"agency":"FReSH","code":"FRESH-PEF64"}]},"title":"Registre National des Tumeurs Solides de l'Enfant (registre qualifi\u00e9 2015-2020)","alternate_title":"RNTSE"},"study_authorization":{"agency":[{"name":"CNIL"}]},"authoring_entity":[{"type":"investigator","name":"Brigitte;LACOUR","PILabo":"CHRU NANCY \/ Registre National des Tumeurs Solides de l'Enfant","affiliationName":"CENTRE HOSPITALIER REGIONAL ET UNIVERSITAIRE DE NANCY","extlink":[{"title":"ORCID","uri":"0000-0002-0111-104X","role":"pi id"},{"title":"IdRef","uri":"250123746","role":"pi id"},{"title":"SIREN","uri":"200042166","role":"organisation id"},{"title":"","uri":"","role":"labo id"}],"email":"brigitte.lacour@univ-lorraine.fr","isContact":"Oui"}],"oth_id":[{"name":"","type":""},{"name":"","type":""}],"production_statement":{"prod_place":"Portail Epid\u00e9miologie France (PEF)","producers":[{"name":"UNIVERSITE PARIS CITE","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/05f82e368","role":"sponsor id"},{"title":"SIREN","uri":"130025737","role":"sponsor id"}],"role":"sponsor"},{"name":"INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE (INSERM)","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/02vjkv261","role":"sponsor id"},{"title":"SIREN","uri":"180036048","role":"sponsor id"}],"role":"sponsor"},{"name":"CENTRE HOSPITALIER REGIONAL ET UNIVERSITAIRE DE NANCY","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/016ncsr12","role":"sponsor id"},{"title":"SIREN","uri":"200042166","role":"sponsor id"}],"role":"sponsor"},{"name":"ASSOCIATION POUR LA RECHERCHE EPIDEMIOLOGIQUE DANS LES CANCERS DE L'ENFANT ET DE L'ADOLESCENT (ARECEA)","extlink":[{"title":"SIREN","uri":"392242822","role":"sponsor id"}],"role":"sponsor"}],"funding_agencies":[{"name":"INSTITUT NATIONAL DU CANCER (INCA)","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/03m8vkq32"},{"title":"SIREN","uri":"187512777"}]},{"name":"SANTE PUBLIQUE FRANCE","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/00dfw9p58"},{"title":"SIREN","uri":"130022338"}]}]},"distribution_statement":{"contact":[{"name":"Brigitte;LACOUR","email":"brigitte.lacour@univ-lorraine.fr","type":"contact","affiliationName":"CENTRE HOSPITALIER REGIONAL ET UNIVERSITAIRE DE NANCY","contactPointLabo":"","extlink":[{"uri":"https:\/\/ror.org\/016ncsr12","role":"organisation id","title":"ROR"},{"uri":"200042166","role":"organisation id","title":"SIREN"}]}]},"study_info":{"keywords":[{"keyword":"enfant"},{"keyword":"adolescent"},{"keyword":"tumeurs solides"}],"topics":[{"topic":"Oncologie","vocab":"health theme","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/5784b7f1-c7ce-49d9-9f38-aebcda0ff41d"},{"title":"MeSH","uri":"http:\/\/id.nlm.nih.gov\/mesh\/D008495"}]},{"topic":"P\u00e9diatrie","vocab":"health theme","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/bf8aaaac-ddee-41cd-bb8a-c5a63de3fcbd"},{"title":"MeSH","uri":"http:\/\/id.nlm.nih.gov\/mesh\/D010372"}]},{"topic":"Tumeurs","vocab":"cim-11","extLink":[{"uri":"http:\/\/id.who.int\/icd\/entity\/1630407678","title":"CIM-11"}]},{"topic":"D\u00e9terminants environnementaux : Autres","vocab":"health determinant"},{"topic":"D\u00e9terminants environnementaux","vocab":"health determinant"}],"purpose":"Objectifs en terme de sant\u00e9 publique (surveillance, \u00e9valuation) : 1) Produire des taux de r\u00e9f\u00e9rence nationale sur l'incidence des tumeurs solides de l'enfant et sur leur distribution histologique et en surveiller les variations g\u00e9ographiques et temporelles. 2) Fournir les taux de survie des diff\u00e9rents cancers en population g\u00e9n\u00e9rale, tous traitements confondus et en surveiller les variations g\u00e9ographiques et temporelles. 3) D\u00e9crire les fili\u00e8res de soins suivies par les enfants, des premiers sympt\u00f4mes au traitement, et les modalit\u00e9s de prise en charge ainsi que ses d\u00e9terminants. Collaborer avec les cliniciens de la Soci\u00e9t\u00e9 Fran\u00e7aise de lutte contre les Cancers de l'Enfant et l'Adolescent (SFCE) sur la mise en place d'un suivi \u00e0 long terme de cohortes d'enfants atteints de cancer. Objectifs en termes de recherche : R\u00e9aliser et associer des \u00e9tudes \u00e9cologiques et des \u00e9tudes cas t\u00e9moins concernant les risques de cancer associ\u00e9s aux expositions environnementales, aux mouvements de population, au mode de vie et aux conditions pr\u00e9coces d'exposition aux infections banales, aux facteurs g\u00e9n\u00e9tiques en interaction ou non avec des facteurs environnementaux. Les travaux de recherches \u00e9tiologiques sont plus particuli\u00e8rement d\u00e9velopp\u00e9s par l'\u00e9quipe EPICEA, UMRS-1153 Equipe 7, INSERM, Universit\u00e9 Paris Descartes.","abstract":"","coll_dates":[{"start":"2000-01-01"}],"nation":[{"name":"France","abbreviation":"fr","extLink":{"vocab":"ISO","vocabURI":"fr"}}],"geog_coverage":"","analysis_unit":"Individus","universe":"{\n    \"level_sex_clusion_I\": [\n        {\n            \"value\": \"Masculin\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D008297\"\n            }\n        },\n        {\n            \"value\": \"F\u00e9minin\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D005260\"\n            }\n        }\n    ],\n    \"level_age_clusion_I\": [\n        {\n            \"value\": \"Nouveau-n\u00e9 (naissance \u00e0 28j)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D007231\"\n            }\n        },\n        {\n            \"value\": \"Nourrisson (28j \u00e0 2 ans)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D007223\"\n            }\n        },\n        {\n            \"value\": \"Petite enfance (2 \u00e0 5 ans)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D002675\"\n            }\n        },\n        {\n            \"value\": \"Enfance (6 \u00e0 12 ans)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D002648\"\n            }\n        },\n        {\n            \"value\": \"Adolescence (13 \u00e0 18 ans)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D000293\"\n            }\n        }\n    ],\n    \"level_type_clusion_I\": \"Patients\",\n    \"level_type_clusion_other\": \"\",\n    \"clusion_I\": \"Sont incluses: Toutes les tumeurs solides de l'enfant d\u00e9finies dans la Classification Internationale des Cancers de l'enfant (ICCC) et appartenant aux groupes diagnostiques III \u00e0 XII, ainsi que les tumeurs \\\"borderline\\\" et certaines tumeurs b\u00e9nignes. Survenant \u00e0 partir du 1er janvier 2000 chez un enfant de moins de 15 ans \u00e0 la date du premier diagnostic de certitude, et dont le domicile habituel est situ\u00e9 en France m\u00e9tropolitaine. A partir du 1er janvier 2011, extension de l'enregistrement jusqu'\u00e0 l'\u00e2ge de 18 ans pour tous les cas domicili\u00e9s en France m\u00e9tropolitaine ou dans un D\u00e9partement d'Outre-Mer (Guadeloupe, Guyane, Martinique, R\u00e9union)\",\n    \"clusion_E\": \"\"\n}","data_kind":"['Donn\u00e9es cliniques','Donn\u00e9es paracliniques','Donn\u00e9es biologiques','Donn\u00e9es socio-d\u00e9mographiques','Donn\u00e9es paracliniques (hors biologiques) : Autre']","quality_statement":{"standards":[{"name":"['ICD-O 3 puis classement selon ICCC 3']","committee":"","governance":""}],"other_quality_statement":""}},"study_development":{"development_activity":[{"activity_type":"primary evaluation","activity_description":"Ev\u00e9nements de sant\u00e9\/morbidit\u00e9\r\nEv\u00e9nements de sant\u00e9\/mortalit\u00e9\r\nConsommation de soins\/services de sant\u00e9"}]},"method":{"data_collection":{"time_method":"","frequency":"","sampling_procedure":"['{\"concept\":{\"vocabURI\":\"Other\",\"vocab\":\"CESSDA\"},\"value\":\"Autre\"}']","sample_frame":{"frame_unit":{"unit_type":""}},"coll_mode":["{\"concept\":{\"vocabURI\":\"Transcription\",\"vocab\":\"CESSDA\"},\"value\":\"Transcription et saisie d\u2019informations dans un enregistrement structur\u00e9\"}"],"research_instrument":"Acc\u00e8s restreint sur projet sp\u00e9cifique","sources":[],"target_sample_size":">= 20000 individus","response_rate":"2011: 1377 cases ; 2012: 1376 cases; 2013: 1405 cases ; 2014: 1311 cases"},"method_notes":"Etude observationnelle","study_class":"Inconnu","notes":[{"subject":"research type","values":["Etude observationnelle"]},{"subject":"observational study method","values":["Registre de morbidit\u00e9"]}]},"data_access":{"dataset_availability":{"access_place":"","complete":"","status":"{\"value\":\"Acc\u00e8s r\u00e9serv\u00e9\",\"extLink\":[{\"title\":\"COAR\",\"uri\":\"http:\/\/purl.org\/coar\/access_right\/c_16ec\"}]}"},"dataset_use":{"restrictions":"","conditions":"","conf_dec":[{"txt":""}],"spec_perm":[{"txt":"","required":""}],"contact":[{"name":""}],"deposit_req":"","cit_req":""},"notes":""}},"additional":{"IsImport":true,"versionLang":"fr","originLang":"fr","autoTranslation":false,"status":"imported","creationDate":"14-12-2010","lastUpdatedAuto":null,"lastUpdatedManual":"04-10-2017","isContributorPI":"Non","contributorName":"Brigitte LACOUR","contributorAffiliation":"CENTRE HOSPITALIER REGIONAL ET UNIVERSITAIRE DE NANCY","addTeamMember":"","obtainedAuthorization":{"otherAuthorizingAgency":[""]},"relatedDocument":[{"type":"","title":"Site du Registre national des tumeurs solides de l'enfant et du Registre national des h\u00e9mopathies malignes de l'enfant","link":"http:\/\/rnce.inserm.fr"}],"regulatoryRequirements":{"conformityDeclaration":""},"fundingAgent":{"fundingAgentType":["Public (France)","Public (France)"],"otherFundingAgentType":["",""]},"sponsor":{"sponsorType":["Public (France)","Public (France)","Public (France)","Priv\u00e9 \u00e0 but non lucratif"],"otherSponsorType":["","","",""]},"governance":{"committee":"Non"},"collaborations":{"networkConsortium":"Oui"},"theme":{"complementaryInformation":"","RareDiseases":""},"activeFollowUp":{"isActiveFollowUp":"Oui","followUpModeOther":""},"interventionalStudy":{"researchPurpose":[],"trialPhase":[],"interventionalStudyModel":"","isClinicalTrial":"","otherResearchPurpose":""},"isInclusionGroups":"","allocation":{"allocationMode":"","allocationUnit":""},"masking":{"maskingType":"","blindedMaskingDetails":[]},"arms":[],"intervention":[],"inclusionGroups":[],"collectionProcess":{"collectionModeDetails":"Recueil actif par des enqu\u00eateurs (ARC) dans les services hospitaliers et listings des D\u00e9partements d\u2019Information M\u00e9dicale des CHU et CLCC","collectionModeOther":""},"dataCollection":{"inclusionStrategyOther":"","samplingModeOther":"","recruitmentSourceOther":"","otherDocumentation":""},"dataCollectionIntegration":{"isDataIntegration":"Non"},"geographicalCoverage":{"geoDetail":"France m\u00e9tropolitaine depuis 2000 + DOM depuis 2011"},"dataTypes":{"clinicalDataDetails":"Dossier clinique","biologicalDataDetails":"Anatomie pathologique\/cytologie, immunoph\u00e9notypage, cytog\u00e9n\u00e9tique, biologie mol\u00e9culaire","isDataInBiobank":"Non","biobankContent":[],"biobankContentOther":"","dataTypeOther":""},"variableDictionnary":{"variableDictionnaryAvailable":"","variableDictionnaryLink":""},"dataQuality":{"otherDocumentation":""},"mockSample":{"mockSampleAvailable":"","mockSampleLocation":""},"thirdPartySource":{"otherSourceType":[]},"isHealthTheme":"Oui","fileDscr":{"fileTxt":{"fileCitation":{"titlStmt":{"IDno":[]}}}}},"schematype":"survey"}