{"doc_desc":{"title":"Registre des cancers du Bas-Rhin (registre qualifi\u00e9)","idno":"FRESH-PEF215-fr","producers":[{"name":"Michel VELTEN","affiliation":"UNIVERSITE DE STRASBOURG"}]},"study_desc":{"title_statement":{"idno":"FRESH-PEF215-fr","IDno":{"metadata_no":[{"agency":"PEF","code":"215"},{"agency":"FReSH","code":"FRESH-PEF215"}]},"title":"Registre des cancers du Bas-Rhin (registre qualifi\u00e9)","alternate_title":""},"study_authorization":{"agency":[{"name":"CNIL"}]},"authoring_entity":[{"type":"investigator","name":"Michel;VELTEN","PILabo":"Facult\u00e9 de M\u00e9decine \/ Laboratoire d\u2019\u00c9pid\u00e9miologie et de sant\u00e9 publique","affiliationName":"UNIVERSITE DE STRASBOURG","extlink":[{"title":"","uri":"","role":"pi id"},{"title":"IdRef","uri":"061540536","role":"pi id"},{"title":"SIREN","uri":"130005457","role":"organisation id"},{"title":"","uri":"","role":"labo id"}],"email":"michel.velten@unistra.fr","isContact":"Oui"}],"oth_id":[{"name":"R\u00e9seau europ\u00e9en des registres des cancers (ENCR), de l'Association internationale des registres des cancers (IACR) et suit les r\u00e8gles de fonctionnement \u00e9tablies par le Centre international de recherche sur le cancer (CIRC). R\u00e9seau fran\u00e7ais des registres des cancers (R\u00e9seau FRANCIM) et collabore avec l'Institut de Veille Sanitaire (InVS) et l'Institut National du Cancer (INCA) dans le cadre du Programme national de surveillance des cancers.","type":"collaboration"}],"production_statement":{"prod_place":"Portail Epid\u00e9miologie France (PEF)","producers":[{"name":"LES HOPITAUX UNIVERSITAIRES DE STRASBOURG (HUS)","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/04bckew43","role":"sponsor id"},{"title":"SIREN","uri":"266700574","role":"sponsor id"}],"role":"sponsor"}],"funding_agencies":[{"name":"SANTE PUBLIQUE FRANCE","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/00dfw9p58"},{"title":"SIREN","uri":"130022338"}]}]},"distribution_statement":{"contact":[{"name":"Michel;VELTEN","email":"michel.velten@unistra.fr","type":"contact","affiliationName":"UNIVERSITE DE STRASBOURG","contactPointLabo":"","extlink":[{"uri":"https:\/\/ror.org\/00pg6eq24","role":"organisation id","title":"ROR"},{"uri":"130005457","role":"organisation id","title":"SIREN"}]}]},"study_info":{"keywords":[{"keyword":"outil"},{"keyword":"recherche \u00e9pid\u00e9miologique"},{"keyword":"\u00e9valuation"},{"keyword":"morbidit\u00e9"},{"keyword":"mortalit\u00e9"},{"keyword":"incidence"},{"keyword":"pr\u00e9valence"},{"keyword":"survie"}],"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"}]}],"purpose":"- Objectifs du registre en termes de sant\u00e9 publique: Le registre a \u00e9t\u00e9 cr\u00e9\u00e9 en 1974 avec deux objectifs principaux : 1. Cr\u00e9er un outil utile \u00e0 la recherche \u00e9pid\u00e9miologique et \u00e0 l\u2019\u00e9valuation, \u00e0 l\u2019image de ce qui se faisait d\u00e9j\u00e0 dans un certain nombre d\u2019autres pays. 2. V\u00e9rifier par des donn\u00e9es de morbidit\u00e9 la situation particuli\u00e8rement d\u00e9favorable de l\u2019Alsace en termes de mortalit\u00e9 tr\u00e8s \u00e9lev\u00e9e par cancer. Le registre des cancers du Bas-Rhin a pour mission d\u2019estimer l\u2019incidence, la pr\u00e9valence et la survie des cancers. Par ailleurs, il a vocation \u00e0 participer aux \u00e9tudes nationales et internationales dans ces domaines : comparaisons des taux d\u2019incidence permettant de situer les diff\u00e9rentes r\u00e9gions g\u00e9ographiques les unes par rapport aux autres sur une base comparable, afin de d\u00e9velopper les travaux permettant d\u2019identifier les facteurs qui expliquent les variations de l\u2019incidence des cancers, de leur pr\u00e9valence et de leur survie. Le registre des cancers est \u00e9galement un outil permettant d\u2019\u00e9valuer l\u2019efficacit\u00e9 des actions de pr\u00e9vention, particuli\u00e8rement les campagnes de d\u00e9pistage organis\u00e9es dans le d\u00e9partement depuis 1989 pour le cancer du sein, 1994 pour le cancer du col de l\u2019ut\u00e9rus et 2008 pour le cancer du c\u00f4lon et du rectum. Il permet, en effet, de suivre l\u2019\u00e9volution des taux d\u2019incidence et de conna\u00eetre la proportion de faux n\u00e9gatifs. - Objectifs du registre en termes de recherche: Le registre d\u00e9veloppe la recherche dans le domaine de l\u2019estimation de l\u2019incidence des cancers dans les zones g\u00e9ographiques o\u00f9 il n\u2019existe pas de registre ainsi que pour l\u2019estimation de la survie par des mod\u00e8les de survie relative et de gu\u00e9rison, afin d\u2019obtenir de meilleures estimations de la survie \u00ab actuelle \u00bb.","abstract":"","coll_dates":[{"start":"1975-01-01"}],"nation":[{"name":"France","abbreviation":"fr","extLink":{"vocab":"ISO","vocabURI":"fr"}}],"geog_coverage":"['Grand Est']","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 ou in situ primitives diagnostiqu\u00e9es chez des sujets r\u00e9sidant dans le d\u00e9partement du Bas-Rhin au moment du diagnostic, quel que soit leur lieu de prise en charge, sont enregistr\u00e9es. Les tumeurs b\u00e9nignes et de malignit\u00e9 interm\u00e9diaire du syst\u00e8me nerveux central et de la vessie sont \u00e9galement enregistr\u00e9es. Les tumeurs baso-cellulaires de la peau sont exclues. Les tumeurs multiples chez un m\u00eame sujet sont enregistr\u00e9es, m\u00eame si elles surviennent simultan\u00e9ment dans des organes pairs ou dans des sous-localisations d\u2019un m\u00eame organe.\",\n    \"clusion_E\": \"Les tumeurs baso-cellulaires de la peau sont exclues. \"\n}","data_kind":"['Donn\u00e9es cliniques','Donn\u00e9es socio-d\u00e9mographiques']","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 restreint sur projet sp\u00e9cifique","sources":[],"target_sample_size":"[1000-10000[ individus","response_rate":"1975- 2004: 122617 cas notifi\u00e9s"},"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":"Contacter le responsable scientifique","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":"23-12-2010","lastUpdatedAuto":null,"lastUpdatedManual":"11-05-2015","isContributorPI":"Non","contributorName":"Michel VELTEN","contributorAffiliation":"UNIVERSITE DE STRASBOURG","addTeamMember":"","obtainedAuthorization":{"otherAuthorizingAgency":[""]},"relatedDocument":[{"type":"","title":"","link":"http:\/\/www.ncbi.nlm.nih.gov\/pubmed?term"},{"type":"","title":"Liste des publications dans Pubmed","link":"http:\/\/tinyurl.com\/PUBMED-RCBR"}],"regulatoryRequirements":{"conformityDeclaration":""},"fundingAgent":{"fundingAgentType":["Public (France)"],"otherFundingAgentType":[""]},"sponsor":{"sponsorType":["Public (France)"],"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":"Consultation de fichiers ou dossiers cliniques sur place ou sur support informatique.","collectionModeOther":""},"dataCollection":{"inclusionStrategyOther":"","samplingModeOther":"","recruitmentSourceOther":"","otherDocumentation":""},"dataCollectionIntegration":{"isDataIntegration":"Non"},"geographicalCoverage":{"geoDetail":"D\u00e9partement du Bas-Rhin (67)"},"dataTypes":{"clinicalDataDetails":"","biologicalDataDetails":"","isDataInBiobank":"Non","biobankContent":[],"biobankContentOther":"","dataTypeOther":""},"variableDictionnary":{"variableDictionnaryAvailable":"","variableDictionnaryLink":""},"dataQuality":{"otherDocumentation":""},"mockSample":{"mockSampleAvailable":"","mockSampleLocation":""},"thirdPartySource":{"otherSourceType":[]},"isHealthTheme":"Oui","fileDscr":{"fileTxt":{"fileCitation":{"titlStmt":{"IDno":[]}}}}},"schematype":"survey"}