{"doc_desc":{"title":"General Registry on Cancer in the Poitou-Charentes Region (Certified 2013-2015 Registry)","idno":"FRESH-PEF200-en","producers":[{"name":"Pierre INGRAND","affiliation":"UNIVERSITE DE POITIERS"}]},"study_desc":{"title_statement":{"idno":"FRESH-PEF200-en","IDno":{"metadata_no":[{"agency":"PEF","code":"200"},{"agency":"FReSH","code":"FRESH-PEF200"}]},"title":"General Registry on Cancer in the Poitou-Charentes Region (Certified 2013-2015 Registry)","alternate_title":""},"study_authorization":{"agency":[]},"authoring_entity":[{"name":"Pierre;INGRAND","firstname":"Pierre","lastname":"INGRAND","type":"investigator","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/04xhy8q59","role":"organisation id"},{"title":"SIREN","uri":"198608564","role":"organisation id"}],"email":"pierre.ingrand@chu-poitiers.fr","affiliationName":"UNIVERSITE DE POITIERS","PILabo":"Faculty of Medicine and Pharmacy at Poitiers Teaching Department \/ Cancer Epidemiology Unit","isContact":true}],"oth_id":[{"name":""}],"production_statement":{"prod_place":"Epidemiology France Portal (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","lastname":"INGRAND","firstname":"Pierre","type":"contact","email":"pierre.ingrand@chu-poitiers.fr","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":"region"},{"keyword":"registry"},{"keyword":"public health"}],"topics":[{"topic":"Oncology","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":"Register aims in terms of public healthcare (monitoring, assessment): The aim of the register is to provide benchmarks for describing the dynamics of cancer progression (distribution, progression and impact of the disease according to the geography and demographics of the population) and to become involved in the evaluation of screening and prevention (by assessing the effectiveness of the programmes in place) and care assessment (analysing treatment paths used by patients; factors that determine diagnostic care management and distribution of good practice recommendations). It shall play a specialist role in aiding the assessment of public policies by the Regional Health Agency (ARS), in collaboration with other regional organisations (Poitou-Charentes Cancer Network, Regional Health Observatory and screening facilities). It shall participate in producing national (FRANCIM) and international (IARC) statistics. Register aims in terms of research: Two research areas are preferred for continuing research conducted by the Public Health Team in Poitiers. 1) Assessing factors that affect access to screening facilities (access to screening facilities for sibship-based index cases) and assessing factors affecting access to care (patient satisfaction; access to technical surgical platforms and waiting periods for radiotherapy). 2) Automated classification of textual information contained in electronic anatomic pathology and cytopathology reports (collaboration with University of 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":"Individuals","universe":"{\n    \"level_sex_clusion_I\": [\n        {\n            \"value\": \"Male\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D008297\"\n            }\n        },\n        {\n            \"value\": \"Female\",\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\": \"Infant, Newborn (birth to 28 days)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D007231\"\n            }\n        },\n        {\n            \"value\": \"Infant (28 days to 2 years)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D007223\"\n            }\n        },\n        {\n            \"value\": \"Child, Preschool (2 to 5 years)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D002675\"\n            }\n        },\n        {\n            \"value\": \"Child (6 to 12 years)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D002648\"\n            }\n        },\n        {\n            \"value\": \"Young Adult (19 to 24 years)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D055815\"\n            }\n        },\n        {\n            \"value\": \"Adult (25 to 44 years)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D000328\"\n            }\n        },\n        {\n            \"value\": \"Middle Aged (45 to 64 years)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D008875\"\n            }\n        },\n        {\n            \"value\": \"Aged (65 to 79 years)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D000368\"\n            }\n        },\n        {\n            \"value\": \"Aged, 80 and over (80 years and more)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D000369\"\n            }\n        }\n    ],\n    \"level_type_clusion_I\": \"Patients population\",\n    \"level_type_clusion_other\": \"\",\n    \"clusion_I\": \"All cases of malignant invasive tumours (haematologic malignancies and solid tumours excluding basal cell carcinoma of the skin); in situ tumours; borderline ovarian tumours; as well as benign tumours or tumours with unpredictable progression in the brain and bladder. Advanced colorectal adenomas will be passively recorded.\",\n    \"clusion_E\": \"\"\n}","data_kind":"['Clinical data','Socio-demographic data']","quality_statement":{"standards":[{"name":"","committee":"","governance":""}],"other_quality_statement":""}},"study_development":{"development_activity":[{"activity_type":"primary evaluation","activity_description":"Health event\/morbidity"}]},"method":{"data_collection":{"time_method":"","frequency":"","sampling_procedure":"['{\"concept\":{\"vocabURI\":\"Other\",\"vocab\":\"CESSDA\"},\"value\":\"Other\"}']","sample_frame":{"frame_unit":{"unit_type":""}},"coll_mode":["{\"concept\":{\"vocabURI\":\"Transcription\",\"vocab\":\"CESSDA\"},\"value\":\"Converting or copying information into a structured record\"}"],"research_instrument":"Access on specific project only","sources":[],"target_sample_size":"[1000-10000[ individuals","response_rate":"3,323 invasive cancers\/217 in situ carcinomas"},"method_notes":"Observational Study","study_class":"Unknown","notes":[{"subject":"research type","values":["Observational Study"]},{"subject":"observational study method","values":["Morbidity registry"]}]},"data_access":{"dataset_availability":{"access_place":"","complete":"","status":"{\"value\":\"Restricted access\",\"extLink\":[{\"title\":\"COAR\",\"uri\":\"http:\/\/purl.org\/coar\/access_right\/c_16ec\"}]}"},"dataset_use":{"restrictions":"","conditions":"Contact the principal investigator","conf_dec":[{"txt":""}],"spec_perm":[{"txt":"","required":""}],"contact":[{"name":""}],"deposit_req":"","cit_req":""},"notes":""}},"additional":{"IsImport":true,"versionLang":"en","originLang":"en","autoTranslation":false,"status":"imported","creationDate":"20-12-2010","lastUpdatedAuto":null,"lastUpdatedManual":"05-07-2016","isContributorPI":false,"contributorName":"","contributorAffiliation":"","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":true,"followUpModeOther":""},"interventionalStudy":{"researchPurpose":[],"trialPhase":[],"interventionalStudyModel":"","isClinicalTrial":"","otherResearchPurpose":""},"isInclusionGroups":"","allocation":{"allocationMode":"","allocationUnit":""},"masking":{"maskingType":"","blindedMaskingDetails":[]},"arms":[],"intervention":[],"inclusionGroups":[],"collectionProcess":{"collectionModeDetails":"Encrypted data collection (active or passive) for eligible cases in anatomic pathology and cytopathology facilities; medical information departments within healthcare establishments (PMSI); national health insurance medical services (ALD). Data collection (active) from records within the Poitou-Charentes Cancer Treatment Network. Active collection (return to medical record) within healthcare establishments (clinical or archiving departments). Collection to identify extra-regional data breaches and to check completeness of data from the regional PMSI base. Passive encrypted data collection from cases recorded by the permanent cancer survey (EPC).","collectionModeOther":""},"dataCollection":{"inclusionStrategyOther":"","samplingModeOther":"","recruitmentSourceOther":"","otherDocumentation":""},"dataCollectionIntegration":{"isDataIntegration":false},"geographicalCoverage":{"geoDetail":"Poitou-Charentes region, i.e. four departments: 16 Charente 17 Charente-Maritime 79 Deux-S\u00e8vres and 86 Vienne."},"dataTypes":{"clinicalDataDetails":"","biologicalDataDetails":"","isDataInBiobank":false,"biobankContent":[],"biobankContentOther":"","dataTypeOther":""},"variableDictionnary":{"variableDictionnaryAvailable":"","variableDictionnaryLink":""},"dataQuality":{"otherDocumentation":""},"mockSample":{"mockSampleAvailable":"","mockSampleLocation":""},"thirdPartySource":{"otherSourceType":[]},"isHealthTheme":true,"fileDscr":{"fileTxt":{"fileCitation":{"titlStmt":{"IDno":[]}}}}},"schematype":"survey"}