{"doc_desc":{"title":"Loire-Atlantique\/Vend\u00e9e cancer registry (registre qualifi\u00e9)","idno":"FRESH-PEF224-en","producers":[{"name":"Florence MOLINIE","affiliation":"EPIDEMIOLOGIE DES CANCERS PAYS DE LOIRE (EPIC PL)"}]},"study_desc":{"title_statement":{"idno":"FRESH-PEF224-en","IDno":{"metadata_no":[{"agency":"PEF","code":"224"},{"agency":"FReSH","code":"FRESH-PEF224"}]},"title":"Loire-Atlantique\/Vend\u00e9e cancer registry (registre qualifi\u00e9)","alternate_title":"EPIC-PL"},"study_authorization":{"agency":[]},"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":"Yes"}],"oth_id":[{"name":"Francim network, Grell network, European network of cancer registries, inernational association of cancer registries. European Research Consortium on ITP (ERCI)","type":"collaboration"}],"production_statement":{"prod_place":"Epidemiology France Portal (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":"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"}]},{"topic":"Neoplasms","vocab":"cim-11","extLink":[{"uri":"http:\/\/id.who.int\/icd\/entity\/1630407678","title":"CIM-11"}]},{"topic":"Socio-demographic and economic determinants","vocab":"health determinant"},{"topic":"Environmental determinants: Other","vocab":"health determinant"},{"topic":"Environmental determinants","vocab":"health determinant"}],"purpose":"The registry carries out a continuous and exhaustive collection of all new cancer diagnoses in the general population living in a given d\u00e9partement. It has the twofold objective of monitoring the cancer risk and of conducting research on cancer. Objectives of the Registry in terms of public health: - Participate in the epidemiological surveillance of cancers at local and national level under the Francim network by publishing incidence indicators by cancer location, gender, age and year of diagnosis. - Evaluate primary and secondary prevention initiatives (organized cancer screening), patient treatment and healthcare needs in the general population. The EPIC-PL undertakes a wide range of projects in liaison with local and national partners. The main themes are: evaluation of treatment practices and research on social inequalities Only a population based registry provides precise and exhaustive information on cancer incidence in the context of the French healthcare system. It is also necessary for evaluating the effectiveness of prevention and screening programs as well as cancer care streams in the general population - with no selection bias.","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":"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 primitive invasive malignant tumors diagnosed in people living in these two d\u00e9partements at the time of diagnosis, irrespective of their treatment location. The following are also recorded:  - in situ breast cancers, cervix cancers, colorectal cancers and in situ melanomas  - non-invasive tumors of the urinary tract and central nervous system and borderline tumors of the ovary. The following are not recorded: - stratum basale skin cancers (only recorded in the Vend\u00e9e from 1997 to 1999) \",\n    \"clusion_E\": \"\"\n}","data_kind":"['Clinical data','Biological data','Socio-demographic data','Paraclinical data (non-biological) : Other']","quality_statement":{"standards":[{"name":"['ICD-O -3']","committee":"","governance":""}],"other_quality_statement":""}},"study_development":{"development_activity":[{"activity_type":"primary evaluation","activity_description":"Health event\/morbidity\r\nHealth event\/mortality"}]},"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":"Free access","sources":[],"target_sample_size":">= 20000 individuals","response_rate":">150 000 in 2017"},"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":"The data recorded in the Registry may be used for specific research. Project requests are analyzed by the Registry's Strategic and Scientific Advisory Board. The arrangements for cooperation must be defined.","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":"30-12-2010","lastUpdatedAuto":null,"lastUpdatedManual":"08-09-2017","isContributorPI":"No","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":["Private non-profit"],"otherSponsorType":[""]},"governance":{"committee":""},"collaborations":{"networkConsortium":"Yes"},"theme":{"complementaryInformation":"","RareDiseases":""},"activeFollowUp":{"isActiveFollowUp":"Yes","followUpModeOther":""},"interventionalStudy":{"researchPurpose":[],"trialPhase":[],"interventionalStudyModel":"","isClinicalTrial":"","otherResearchPurpose":""},"isInclusionGroups":"","allocation":{"allocationMode":"","allocationUnit":""},"masking":{"maskingType":"","blindedMaskingDetails":[]},"arms":[],"intervention":[],"inclusionGroups":[],"collectionProcess":{"collectionModeDetails":"Active or passive collection (CNIL authorization), depending on source:- Systematic requests for anatomocytopathology reports- Annual systematic requests for PMSI files (Standardized selection procedure) or lists comprising more items, such as the Permanent Cancer Survey conducted by the cancer prevention centers - Annual systematic requests for files of patients diagnosed with one of the chronic diseases from the ALD 30 list.- Spontaneous passive declaration and active reminder posted to physicians- Active search for regular complementary information in medical records.","collectionModeOther":""},"dataCollection":{"inclusionStrategyOther":"","samplingModeOther":"","recruitmentSourceOther":"","otherDocumentation":""},"dataCollectionIntegration":{"isDataIntegration":"No"},"geographicalCoverage":{"geoDetail":"Loire-Atlantique and Vend\u00e9e"},"dataTypes":{"clinicalDataDetails":"","biologicalDataDetails":"Any additional examination providing information for tumor coding","isDataInBiobank":"No","biobankContent":[],"biobankContentOther":"","dataTypeOther":""},"variableDictionnary":{"variableDictionnaryAvailable":"","variableDictionnaryLink":""},"dataQuality":{"otherDocumentation":""},"mockSample":{"mockSampleAvailable":"","mockSampleLocation":""},"thirdPartySource":{"otherSourceType":[]},"isHealthTheme":"Yes","fileDscr":{"fileTxt":{"fileCitation":{"titlStmt":{"IDno":[]}}}}},"schematype":"survey"}