{"doc_desc":{"title":"Registre g\u00e9n\u00e9ral des cancers de Lille et de sa r\u00e9gion (registre qualifi\u00e9)","idno":"FRESH-PEF222-fr","producers":[{"name":"Karine LIGIER","affiliation":"HOSPICES CIVILS DE LYON (HCL)"}]},"study_desc":{"title_statement":{"idno":"FRESH-PEF222-fr","IDno":{"metadata_no":[{"agency":"PEF","code":"222"},{"agency":"FReSH","code":"FRESH-PEF222"}]},"title":"Registre g\u00e9n\u00e9ral des cancers de Lille et de sa r\u00e9gion (registre qualifi\u00e9)","alternate_title":""},"study_authorization":{"agency":[{"name":"CNIL"}]},"authoring_entity":[{"type":"investigator","name":"Sandrine;PLOUVIER","PILabo":"Centre de r\u00e9f\u00e9rence r\u00e9gional en Canc\u00e9rologie","affiliationName":"centre de r\u00e9f\u00e9rence r\u00e9gional en canc\u00e9rologie","extlink":[{"title":"","uri":"","role":"pi id"},{"title":"IdRef","uri":"091625033","role":"pi id"},{"title":"","uri":"","role":"organisation id"},{"title":"","uri":"","role":"labo id"}],"email":"SPLOUVIER@registrecancers59.fr","isContact":"Oui"}],"oth_id":[{"name":""}],"production_statement":{"prod_place":"Portail Epid\u00e9miologie France (PEF)","producers":[{"name":""}],"funding_agencies":[{"name":"AGENCE REGIONALE DE SANTE HAUTS-DE-FRANCE (ARS)","extlink":[{"title":"SIREN","uri":"130007974"}]},{"name":"INSTITUT NATIONAL DU CANCER (INCA)","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/03m8vkq32"},{"title":"SIREN","uri":"187512777"}]},{"name":"REGION HAUTS-DE-France","extlink":[{"title":"SIREN","uri":"200053742"}]},{"name":"SANTE PUBLIQUE FRANCE","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/00dfw9p58"},{"title":"SIREN","uri":"130022338"}]},{"name":"","extlink":[]}]},"distribution_statement":{"contact":[{"name":"Sandrine;PLOUVIER","email":"SPLOUVIER@registrecancers59.fr","type":"contact","affiliationName":"centre de r\u00e9f\u00e9rence r\u00e9gional en canc\u00e9rologie","contactPointLabo":"","extlink":[]}]},"study_info":{"keywords":[{"keyword":"\u00e9pid\u00e9miologie descriptive"},{"keyword":"incidence"}],"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 environnementaux : Autres","vocab":"health determinant"},{"topic":"D\u00e9terminants environnementaux","vocab":"health determinant"}],"purpose":"Objectifs du registre en termes de sant\u00e9 publique (surveillance, \u00e9valuation) - Produire des statistiques locales \u00e0 destination des institutionnels et notamment des d\u00e9cideurs, des chercheurs, des associations, du grand public pour d\u00e9crire l\u2019\u00e9volution temporelle de l\u2019incidence des cancers et de leur distribution g\u00e9ographique, pour planifier et suivre l\u2019efficacit\u00e9 de la prise en charge (pr\u00e9valence, survie), pour l\u2019investigation de clusters. - Participer \u00e0 la production de statistiques nationales et r\u00e9gionales (Francim) et internationales (CIRC) sur le cancer : incidence, pr\u00e9valence, survie. - Evaluer l\u2019impact de mesures de sant\u00e9 publique (programmes de d\u00e9pistage organis\u00e9, programmes r\u00e9gionaux de sant\u00e9). Objectifs du registre en termes de recherche - Evaluer les pratiques m\u00e9dicales et la prise en charge des patients dans le cadre d\u2019\u00e9tudes sp\u00e9cifiques r\u00e9alis\u00e9es \u00e0 partir des donn\u00e9es exhaustives et non biais\u00e9es produites par le registre (\u00e9tudes haute r\u00e9solution). - D\u00e9velopper des \u00e9tudes \u00e9tiologiques notamment sur les d\u00e9terminants professionnels et environnementaux des cancers. - D\u00e9velopper des \u00e9tudes sur les d\u00e9terminants socio-\u00e9conomiques et cliniques de la prise en charge et de la survie des patients atteints de cancer.","abstract":"","coll_dates":[{"start":"2005-01-01","end":"2012-01-01"}],"nation":[{"name":"France","abbreviation":"fr","extLink":{"vocab":"ISO","vocabURI":"fr"}}],"geog_coverage":"['Hauts-de-France']","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\": \"Tumeurs diagnostiqu\u00e9es \u00e0 partir du 1er janvier 2005 chez les personnes de plus de 15 ans, domicili\u00e9es dans la zone de proximit\u00e9 de Lille : - cancers invasifs sauf tumeurs h\u00e9matologiques (except\u00e9s les lymphomes inclus) - cancers in situ du colon-rectum, sein, col de l\u2019ut\u00e9rus, m\u00e9lanome - tumeurs \u00ab borderline \u00bb des ovaires - tumeurs b\u00e9nignes ou \u00e0 \u00e9volution impr\u00e9visible pour les tumeurs de la vessie et du syst\u00e8me nerveux central, Tumeurs diagnostiqu\u00e9es \u00e0 partir du 1er janvier 2006 : extension aux personnes de moins de 15 ans et aux h\u00e9mopathies malignes\",\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":"","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":"[10000-20000[ individus","response_rate":"4000 cas par an\/by year"},"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. Une charte d\u00e9finissant les modalit\u00e9s de collaborations est t\u00e9l\u00e9chargeable sur le site internet du registre.","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":"07-08-2019","isContributorPI":"Non","contributorName":"Karine LIGIER","contributorAffiliation":"HOSPICES CIVILS DE LYON (HCL)","addTeamMember":"","obtainedAuthorization":{"otherAuthorizingAgency":[""]},"relatedDocument":[{"type":"","title":"","link":"http:\/\/www.registrecancers59.fr\/index.php\/publications-et-rapport"}],"regulatoryRequirements":{"conformityDeclaration":""},"fundingAgent":{"fundingAgentType":["Public (France)","Public (France)","Public (France)","Public (France)","Priv\u00e9 \u00e0 but non lucratif"],"otherFundingAgentType":["","","","",""]},"sponsor":{"sponsorType":[],"otherSponsorType":[]},"governance":{"committee":""},"collaborations":{"networkConsortium":""},"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:- Extraction automatis\u00e9e des comptes-redus d'anatomocytopathologie des laboratoires d'anatomocytopathologie - Extraction des bases PMSI- Extraction des bases de l'Assurance maladie- Transfert de donn\u00e9es par fichiers crypt\u00e9s- Consultation des dossiers m\u00e9dicaux par les enqu\u00eateurs du registre","collectionModeOther":""},"dataCollection":{"inclusionStrategyOther":"","samplingModeOther":"","recruitmentSourceOther":"","otherDocumentation":""},"dataCollectionIntegration":{"isDataIntegration":"Non"},"geographicalCoverage":{"geoDetail":"Zone d'emploi : zone de proximit\u00e9 de Lille"},"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"}