{"doc_desc":{"title":"Registre g\u00e9n\u00e9ral des cancers de la r\u00e9gion Poitou-Charentes (Registre qualifi\u00e9 2013-2015)","idno":"FRESH-PEF200-fr","producers":[{"name":"Pierre INGRAND","affiliation":"UNIVERSITE DE POITIERS"}]},"study_desc":{"title_statement":{"idno":"FRESH-PEF200-fr","IDno":{"metadata_no":[{"agency":"PEF","code":"200"},{"agency":"FReSH","code":"FRESH-PEF200"}]},"title":"Registre g\u00e9n\u00e9ral des cancers de la r\u00e9gion Poitou-Charentes (Registre qualifi\u00e9 2013-2015)","alternate_title":""},"study_authorization":{"agency":[{"name":"CNIL"}]},"authoring_entity":[{"type":"investigator","name":"Pierre;INGRAND","PILabo":"Faculty of Medicine and Pharmacy at Poitiers Teaching Department \/ Cancer Epidemiology Unit","affiliationName":"UNIVERSITE DE POITIERS","extlink":[{"title":"ORCID","uri":"0000-0002-7765-2520","role":"pi id"},{"title":"IdRef","uri":"031207774","role":"pi id"},{"title":"SIREN","uri":"198608564","role":"organisation id"},{"title":"","uri":"","role":"labo id"}],"email":"pierre.ingrand@chu-poitiers.fr","isContact":"Oui"}],"oth_id":[{"name":""}],"production_statement":{"prod_place":"Portail Epid\u00e9miologie France (PEF)","producers":[{"name":"UNIVERSITE DE POITIERS","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/04xhy8q59","role":"sponsor id"},{"title":"SIREN","uri":"198608564","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"}]}]},"distribution_statement":{"contact":[{"name":"Pierre;INGRAND","email":"pierre.ingrand@chu-poitiers.fr","type":"contact","affiliationName":"UNIVERSITE DE POITIERS","contactPointLabo":"","extlink":[{"uri":"https:\/\/ror.org\/04xhy8q59","role":"organisation id","title":"ROR"},{"uri":"198608564","role":"organisation id","title":"SIREN"}]}]},"study_info":{"keywords":[{"keyword":"Registre"},{"keyword":"sant\u00e9 publique"},{"keyword":"r\u00e9gion"}],"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 (surveillance, \u00e9valuation): Le registre a pour objectif de fournir des indicateurs de r\u00e9f\u00e9rence permettant de d\u00e9crire la dynamique d\u2019\u00e9volution des cancers (distribution, \u00e9volution et impact de la maladie selon les caract\u00e9ristiques g\u00e9ographiques et d\u00e9mographiques de la population) et intervient dans l\u2019\u00e9valuation de la pr\u00e9vention et du d\u00e9pistage (en \u00e9valuant l\u2019efficacit\u00e9 pratique des programmes mis en place) et dans l\u2019\u00e9valuation des soins (par l\u2019analyse des fili\u00e8res de soins emprunt\u00e9s par les patients, les d\u00e9terminants du choix de mode de prise en charge diagnostique, la diffusion des recommandations de bonne pratique). Il jouera son r\u00f4le d\u2019expert dans l\u2019aide \u00e0 l\u2019\u00e9valuation des politiques publiques aupr\u00e8s de l\u2019Agence R\u00e9gionale de Sant\u00e9 (ARS), en collaboration avec les autres structures r\u00e9gionales (R\u00e9seau Onco Poitou-Charentes, Observatoire R\u00e9gional de la Sant\u00e9, structures de d\u00e9pistage). Il participera \u00e0 la production de statistiques nationales (FRANCIM) et internationales (CIRC). Objectifs du registre en termes de recherche: Deux axes de recherche sont privil\u00e9gi\u00e9s dans la continuit\u00e9 des travaux r\u00e9alis\u00e9s au sein de l\u2019\u00e9quipe de Sant\u00e9 Publique de Poitiers. 1) L\u2019\u00e9valuation des d\u00e9terminants de l\u2019acc\u00e8s au d\u00e9pistage (acc\u00e8s au d\u00e9pistage des fratries des cas index incident) et l\u2019\u00e9valuation des d\u00e9terminants de l\u2019acc\u00e8s aux soins (satisfaction des patients, acc\u00e8s aux plateaux techniques chirurgicaux et d\u00e9lais d\u2019attente de radioth\u00e9rapie). 2) La classification automatis\u00e9e de l\u2019information textuelle contenue dans les comptes rendus d\u2019anatomie et de cytologie pathologiques informatis\u00e9s (collaboration Universit\u00e9 de Rennes 1).","abstract":"","coll_dates":[{"start":"2008-01-01"}],"nation":[{"name":"France","abbreviation":"fr","extLink":{"vocab":"ISO","vocabURI":"fr"}}],"geog_coverage":"['Nouvelle-Aquitaine']","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\": \"Tous les cas de tumeurs malignes invasives (h\u00e9mopathies malignes et tumeurs solides en-dehors des carcinomes baso-cellulaires de la peau), les tumeurs in situ, les tumeurs borderline des ovaires, et les tumeurs b\u00e9nignes ou d\u2019\u00e9volution impr\u00e9visible du cerveau et de la vessie. Les ad\u00e9nomes avanc\u00e9s colorectaux font l\u2019objet d\u2019un enregistrement passif.\",\n    \"clusion_E\": \"\"\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"}]},"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":"3 323 cancers invasifs \/ 217 carcinomes in situ"},"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":"20-12-2010","lastUpdatedAuto":null,"lastUpdatedManual":"05-07-2016","isContributorPI":"Non","contributorName":"Pierre INGRAND","contributorAffiliation":"UNIVERSITE DE POITIERS","addTeamMember":"","obtainedAuthorization":{"otherAuthorizingAgency":[""]},"relatedDocument":[{"type":"","title":"Liste des publications dans Pubmed","link":"http:\/\/tinyurl.com\/PUBMED-PCCR"}],"regulatoryRequirements":{"conformityDeclaration":""},"fundingAgent":{"fundingAgentType":["Public (France)"],"otherFundingAgentType":[""]},"sponsor":{"sponsorType":["Public (France)"],"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 informatique crypt\u00e9 (actif ou passif) des cas \u00e9ligibles dans les Structures d\u2019anatomie et de cytologies pathologiques, les Services d\u2019information m\u00e9dicale des \u00e9tablissements de sant\u00e9 (PMSI), les Services m\u00e9dicaux de l\u2019Assurance Maladie (ALD).Recueil informatique (actif) des fiches du R\u00e9seau de Canc\u00e9rologie Onco Poitou-CharentesRecueil actif (retour au dossier m\u00e9dical) dans les \u00e9tablissements de sant\u00e9 (services cliniques ou archives)Recueil pour identification des fuites extrar\u00e9gionales et contr\u00f4le de l\u2019exhaustivit\u00e9 des donn\u00e9es de la Base r\u00e9gionale PMSI domicili\u00e9eRecueil informatique crypt\u00e9 passif des cas enregistr\u00e9s par l\u2019EPC (Enqu\u00eate Permanente Cancer)","collectionModeOther":""},"dataCollection":{"inclusionStrategyOther":"","samplingModeOther":"","recruitmentSourceOther":"","otherDocumentation":""},"dataCollectionIntegration":{"isDataIntegration":"Non"},"geographicalCoverage":{"geoDetail":"R\u00e9gion Poitou-Charentes, soit quatre d\u00e9partements : 16 Charente, 17 Charente-Maritime, 79 Deux-S\u00e8vres et 86 Vienne"},"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"}