{"doc_desc":{"title":"Bas-Rhin Cancer Registry (Certified Registry)","idno":"FRESH-PEF215-en","producers":[{"name":"Michel VELTEN","affiliation":"UNIVERSITE DE STRASBOURG"}]},"study_desc":{"title_statement":{"idno":"FRESH-PEF215-en","IDno":{"metadata_no":[{"agency":"PEF","code":"215"},{"agency":"FReSH","code":"FRESH-PEF215"}]},"title":"Bas-Rhin Cancer Registry (Certified Registry)","alternate_title":""},"study_authorization":{"agency":[]},"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":"Yes"}],"oth_id":[{"name":"European Network of Cancer Registries (ENCR), International Association of Cancer Registries (IACR) and compliance with operating rules established by the International Agency for Research on Cancer (IARC). French Network of Cancer Registries (FRANCIM Network) and collaboration with the French Institute for Public Health Surveillance (InVS) and National Cancer Institute (INCA), as part of the national cancer surveillance programme.","type":"collaboration"}],"production_statement":{"prod_place":"Epidemiology France Portal (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":"tool"},{"keyword":"epidemiological research"},{"keyword":"assessment"},{"keyword":"morbidity"},{"keyword":"mortality"},{"keyword":"incidence"},{"keyword":"prevalence"},{"keyword":"survival"}],"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":"- Registry objectives regarding public health: The registry was created in 1974 with two main aims: 1. To create a useful tool for epidemiological research and evaluation, modelled on tools established in various other countries; 2. To verify morbidity data of the unfavourable situation in Alsace with regards to high cancer mortality. The Bas-Rhin cancer registry is responsible for estimating cancer incidence, prevalence and survival. The registry also aims to participate in national and international studies in these areas: comparing incidence rates to locate different geographical regions and compare them in a database; to develop existing work to identify factors that explain variations in cancer incidence, prevalence and survival. The cancer registry is also a tool for assessing the effectiveness of preventive measures, especially screening campaigns throughout the d\u00e9partement for breast cancer since 1989, cervical and colon cancer since 1994 and colon and rectal cancer since 2008. As such, the trend in incidence rate can be monitored and the proportion of false negatives can be documented. - Registry research objectives: The registry is developing research in the field of estimating cancer incidence in geographical areas with no registry, as well as estimating survival through relative survival and healing models in order to obtain the best \"current\" survival estimates.","abstract":"","coll_dates":[{"start":"1975-01-01"}],"nation":[{"name":"France","abbreviation":"fr","extLink":{"vocab":"ISO","vocabURI":"fr"}}],"geog_coverage":"['Grand Est']","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 diagnosed malignant or primitive in situ tumours are registered for subjects residing in the Bas-Rhin d\u00e9partement at the time of diagnosis, regardless of their treatment location. Benign and intermediate malignant tumours in the bladder and central nervous system are also registered. Basocellular skin tumours are excluded. Multiple tumours in the same subject are registered, regardless if they occur simultaneously in paired organs or sub-locations of the same organ.\",\n    \"clusion_E\": \"Basocellular skin tumours are excluded.\"\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\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":"Access on specific project only","sources":[],"target_sample_size":"[1000-10000[ individuals","response_rate":"1975-2004: 122,617 reported cases."},"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":"23-12-2010","lastUpdatedAuto":null,"lastUpdatedManual":"11-05-2015","isContributorPI":"No","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":"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":"Consultation of files or clinical records on-site or electronically.","collectionModeOther":""},"dataCollection":{"inclusionStrategyOther":"","samplingModeOther":"","recruitmentSourceOther":"","otherDocumentation":""},"dataCollectionIntegration":{"isDataIntegration":"No"},"geographicalCoverage":{"geoDetail":"Bas-Rhin d\u00e9partement (67)."},"dataTypes":{"clinicalDataDetails":"","biologicalDataDetails":"","isDataInBiobank":"No","biobankContent":[],"biobankContentOther":"","dataTypeOther":""},"variableDictionnary":{"variableDictionnaryAvailable":"","variableDictionnaryLink":""},"dataQuality":{"otherDocumentation":""},"mockSample":{"mockSampleAvailable":"","mockSampleLocation":""},"thirdPartySource":{"otherSourceType":[]},"isHealthTheme":"Yes","fileDscr":{"fileTxt":{"fileCitation":{"titlStmt":{"IDno":[]}}}}},"schematype":"survey"}