{"doc_desc":{"title":"Registre des cancers de Loire-Atlantique et Vend\u00e9e (registre qualifi\u00e9 2016-2020)","idno":"FRESH-PEF224-fr","producers":[{"name":"Florence MOLINIE","affiliation":"EPIDEMIOLOGIE DES CANCERS PAYS DE LOIRE (EPIC PL)"}]},"study_desc":{"title_statement":{"idno":"FRESH-PEF224-fr","IDno":{"metadata_no":[{"agency":"PEF","code":"224"},{"agency":"FReSH","code":"FRESH-PEF224"}]},"title":"Registre des cancers de Loire-Atlantique et Vend\u00e9e (registre qualifi\u00e9 2016-2020)","alternate_title":"EPIC-PL"},"study_authorization":{"agency":[{"name":"CNIL"}]},"authoring_entity":[{"type":"investigator","name":"Florence;MOLINIE","PILabo":"Loire-Atlantique et Vend\u00e9e Cancer Registry","affiliationName":"EPIDEMIOLOGIE DES CANCERS PAYS DE LOIRE (EPIC PL)","extlink":[{"title":"","uri":"","role":"pi id"},{"title":"IdRef","uri":"130816299","role":"pi id"},{"title":"SIREN","uri":"438959975","role":"organisation id"},{"title":"","uri":"","role":"labo id"}],"email":"fmolinie@chu-nantes.fr","isContact":"Oui"}],"oth_id":[{"name":"R\u00e9seau Fran\u00e7ais des registres de cancers - FRANCIM, GRELL, ENCR, IACR. European Research Consortium on Immune thrombocytopenia (ERCI)","type":"collaboration"}],"production_statement":{"prod_place":"Portail Epid\u00e9miologie France (PEF)","producers":[{"name":"EPIDEMIOLOGIE DES CANCERS PAYS DE LOIRE (EPIC PL)","extlink":[{"title":"SIREN","uri":"438959975","role":"sponsor id"}],"role":"sponsor"}],"funding_agencies":[{"name":""}]},"distribution_statement":{"contact":[{"name":"Florence;MOLINIE","email":"fmolinie@chu-nantes.fr","type":"contact","affiliationName":"EPIDEMIOLOGIE DES CANCERS PAYS DE LOIRE (EPIC PL)","contactPointLabo":"","extlink":[{"uri":"438959975","role":"organisation id","title":"SIREN"}]}]},"study_info":{"keywords":[],"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":"Tumeurs","vocab":"cim-11","extLink":[{"uri":"http:\/\/id.who.int\/icd\/entity\/1630407678","title":"CIM-11"}]},{"topic":"D\u00e9terminants socio-d\u00e9mographiques et \u00e9conomiques","vocab":"health determinant"},{"topic":"D\u00e9terminants environnementaux : Autres","vocab":"health determinant"},{"topic":"Syst\u00e8mes de soins et acc\u00e8s aux soins","vocab":"health determinant"},{"topic":"D\u00e9terminants environnementaux","vocab":"health determinant"}],"purpose":"Le registre r\u00e9alise un recueil continu et exhaustif de tous les nouveaux diagnostics de cancer dans la population g\u00e9n\u00e9rale r\u00e9sidant dans un d\u00e9partement donn\u00e9. Il a le double objectif de d\u00e9crire et surveiller le risque de cancer et de conduire des recherches \u00e0 partir de l'analyse des donn\u00e9es recueillies ou d'enqu\u00eates ponctuelles. Objectifs du Registre en termes de sant\u00e9 publique: - Participer \u00e0 la surveillance \u00e9pid\u00e9miologique des cancers au niveau local et national dans le cadre du r\u00e9seau Francim, par la publication d\u2019indicateurs d\u2019incidence par localisation de cancer, par sexe, par \u00e2ge et par ann\u00e9e de diagnostic. - Contribuer \u00e0 l\u2019\u00e9valuation des actions de pr\u00e9vention primaire et secondaire (d\u00e9pistage organis\u00e9 des cancers), des prises en charge des patients et des besoins de soins en population g\u00e9n\u00e9rale. L'EPIC-PL s'engage dans de nombreux projets en collaboration avec des partenaires locaux et nationaux. Les principaux th\u00e8mes sont : l'\u00e9valuation des pratiques de prise en charge et la recherche sur les in\u00e9galit\u00e9s sociales Seul un registre de population permet d\u2019obtenir des informations pr\u00e9cises et exhaustives sur l\u2019incidence des cancers dans le cadre du syst\u00e8me de soins fran\u00e7ais. Il est \u00e9galement indispensable pour \u00e9valuer l\u2019efficacit\u00e9 des programmes de pr\u00e9vention et de d\u00e9pistage ainsi que des fili\u00e8res de soins des cancers en population g\u00e9n\u00e9rale sans biais de s\u00e9lection.","abstract":"","coll_dates":[{"start":"1991-01-01","end":"2015-01-01"}],"nation":[{"name":"France","abbreviation":"fr","extLink":{"vocab":"ISO","vocabURI":"fr"}}],"geog_coverage":"['Pays de la Loire']","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            \"value\": \"Adulte (19 \u00e0 24 ans)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D055815\"\n            }\n        },\n        {\n            \"value\": \"Adulte (25 \u00e0 44 ans)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D000328\"\n            }\n        },\n        {\n            \"value\": \"Adulte (45 \u00e0 64 ans)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D008875\"\n            }\n        },\n        {\n            \"value\": \"Personne \u00e2g\u00e9e (65 \u00e0 79 ans)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D000368\"\n            }\n        },\n        {\n            \"value\": \"Grand \u00e2ge (80 ans et plus)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D000369\"\n            }\n        }\n    ],\n    \"level_type_clusion_I\": \"Patients\",\n    \"level_type_clusion_other\": \"\",\n    \"clusion_I\": \"Toutes les tumeurs malignes invasives primitives diagnostiqu\u00e9es chez des personnes r\u00e9sidant dans ces deux d\u00e9partements au moment du diagnostic, quel que soit leur lieu de prise en charge. Sont \u00e9galement enregistr\u00e9s :  - les cancers in situ du sein, du col de l'uterus, du colon-rectum et les m\u00e9lanomes in situ  - les tumeurs non invasive de l'arbre urinaire et du syst\u00e8me nerveux central et les tumeurs borderline de l'ovaire. Ne sont pas enregistr\u00e9s : - les cancers de la peau basocellulaires (enregistr\u00e9s seulement en Vend\u00e9e de 1997 \u00e0 1999) \",\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":"['CIM-O 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"}]},"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 libre","sources":[],"target_sample_size":">= 20000 individus","response_rate":">150 000 en 2017"},"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":"Les donn\u00e9es enregistr\u00e9es dans la base du Registre peuvent faire l'objet d'\u00e9tudes sp\u00e9cifiques. Les demandes de projets sont analys\u00e9es par le Conseil Scientifique et Strat\u00e9gique du Registre. Les modalit\u00e9s de collaborations doivent \u00eatre d\u00e9finies.","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":"30-12-2010","lastUpdatedAuto":null,"lastUpdatedManual":"08-09-2017","isContributorPI":"Non","contributorName":"Florence MOLINIE","contributorAffiliation":"EPIDEMIOLOGIE DES CANCERS PAYS DE LOIRE (EPIC PL)","addTeamMember":"","obtainedAuthorization":{"otherAuthorizingAgency":[""]},"relatedDocument":[{"type":"","title":"publications listed on the registry website","link":"http:\/\/www.santepaysdelaloire.com\/registre-des-cancers\/articles\/publications-scientifiques"}],"regulatoryRequirements":{"conformityDeclaration":""},"fundingAgent":{"fundingAgentType":[],"otherFundingAgentType":[]},"sponsor":{"sponsorType":["Priv\u00e9 \u00e0 but non lucratif"],"otherSponsorType":[""]},"governance":{"committee":""},"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 ou passif (Autorisation CNIL), selon les sources:- Demandes syst\u00e9matiques de compte-rendus d'anatomocytopathologie- Demandes syst\u00e9matiques annuelles de fichiers PMSI (Modalit\u00e9s de s\u00e9lection standardis\u00e9es) ou listes comportant davantage d\u2019items telle que l\u2019Enqu\u00eate Permanente Cancer des CLCC - Demandes syst\u00e9matiques annuelles de fichiers de patients mis en ALD30- D\u00e9claration passive spontan\u00e9e et courrier actif de relance aux m\u00e9decins- Recherche active d\u2019informations compl\u00e9mentaires r\u00e9guli\u00e8res dans les dossiers m\u00e9dicaux.","collectionModeOther":""},"dataCollection":{"inclusionStrategyOther":"","samplingModeOther":"","recruitmentSourceOther":"","otherDocumentation":""},"dataCollectionIntegration":{"isDataIntegration":"Non"},"geographicalCoverage":{"geoDetail":"D\u00e9partements de Loire-Atlantique et de Vend\u00e9e"},"dataTypes":{"clinicalDataDetails":"","biologicalDataDetails":"Tout examen compl\u00e9mentaire apportant des informations pour le codage de la tumeur","isDataInBiobank":"Non","biobankContent":[],"biobankContentOther":"","dataTypeOther":""},"variableDictionnary":{"variableDictionnaryAvailable":"","variableDictionnaryLink":""},"dataQuality":{"otherDocumentation":""},"mockSample":{"mockSampleAvailable":"","mockSampleLocation":""},"thirdPartySource":{"otherSourceType":[]},"isHealthTheme":"Oui","fileDscr":{"fileTxt":{"fileCitation":{"titlStmt":{"IDno":[]}}}}},"schematype":"survey"}