{"doc_desc":{"title":"HAUT-RHIN CANCER REGISTRY","idno":"FRESH-PEF4865-en","producers":[{"name":"Antoine BUEMI","affiliation":"GROUPE HOSPITALIER DE LA REGION DE MULHOUSE ET SUD ALSACE (GHRMSA)"}]},"study_desc":{"title_statement":{"idno":"FRESH-PEF4865-en","IDno":{"metadata_no":[{"agency":"PEF","code":"4865"},{"agency":"FReSH","code":"FRESH-PEF4865"}]},"title":"HAUT-RHIN CANCER REGISTRY","alternate_title":"ARER 68"},"study_authorization":{"agency":[]},"authoring_entity":[{"name":"Emilie;MARRER","firstname":"Emilie","lastname":"MARRER","type":"investigator","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/054jcxz87","role":"organisation id"},{"title":"SIREN","uri":"200046985","role":"organisation id"}],"email":"e-marrer@chru-nancy.fr","affiliationName":"GROUPE HOSPITALIER DE LA REGION DE MULHOUSE ET SUD ALSACE (GHRMSA)","PILabo":"Centre hospitalier de","isContact":true}],"oth_id":[{"name":""}],"production_statement":{"prod_place":"Epidemiology France Portal (PEF)","producers":[{"name":"ASS RECHERCHE EPIDEMIOLOGIQUE REGISTRES (ARER68)","extlink":[{"title":"SIREN","uri":"352113096","role":"sponsor id"}],"role":"sponsor"}],"funding_agencies":[{"name":"COMMUNE DE COLMAR","extlink":[{"title":"SIREN","uri":"216800664"}]},{"name":"COMMUNE DE MULHOUSE","extlink":[{"title":"SIREN","uri":"216802249"}]},{"name":"CONSEIL DEPARTEMENTAL DU HAUT-RHIN"},{"name":"INSTITUT NATIONAL DU CANCER (INCA)","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/03m8vkq32"},{"title":"SIREN","uri":"187512777"}]},{"name":"SANTE PUBLIQUE FRANCE","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/00dfw9p58"},{"title":"SIREN","uri":"130022338"}]},{"name":""}]},"distribution_statement":{"contact":[{"name":"Emilie;MARRER","lastname":"MARRER","firstname":"Emilie","type":"contact","email":"e-marrer@chru-nancy.fr","affiliationName":"GROUPE HOSPITALIER DE LA REGION DE MULHOUSE ET SUD ALSACE (GHRMSA)","contactPointLabo":"","extlink":[{"uri":"https:\/\/ror.org\/054jcxz87","role":"organisation id","title":"ROR"},{"uri":"200046985","role":"organisation id","title":"SIREN"}]}]},"study_info":{"keywords":[{"keyword":"Cancer"},{"keyword":"incidence"}],"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":"Behavioral determinants","vocab":"health determinant"},{"topic":"Biological determinants: Genetic predisposition","vocab":"health determinant"},{"topic":"Socio-demographic and economic determinants","vocab":"health determinant"},{"topic":"Healthcare system determinants: Use of care","vocab":"health determinant"},{"topic":"Environmental determinants","vocab":"health determinant"},{"topic":"Environmental determinants: Other","vocab":"health determinant"},{"topic":"Socio-demographic and economic determinants: Employment","vocab":"health determinant"},{"topic":"Behavioral determinants: Addiction","vocab":"health determinant"},{"topic":"Environmental determinants: Climate","vocab":"health determinant"},{"topic":"Behavioral determinants: Eating habits","vocab":"health determinant"},{"topic":"Biological determinants","vocab":"health determinant"},{"topic":"Healthcare system determinants","vocab":"health determinant"}],"purpose":"To identify all new cancer cases occurring among Haut-Rhin inhabitants, including those diagnosed and treated elsewhere.","abstract":"","coll_dates":[{"start":"1982-01-01","end":"2010-01-01"}],"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\": \"The Haut-Rhin cancer registry includes all patients with a tumour that meet the criteria outlined below and who are residing in Haut-Rhin at the time of diagnosis. Tumours included: - malignant and invasive tumours during first identification of primary site or, alternatively, during identification of unknown primary site with metastases (the primary site declared as \\\"uncertain\\\" in this case), - benign intracranial tumours since 1991 are also recorded:- baso-cellular skin carcinoma, - non-invasive in situ or intraepithelial malignant tumours, no previous appearance of invasive tumour of the same histological type and site for the same subject, - non-invasive bladder tumours. However, calculations do not take into account the incidence of invasive malignancies. To compare data with registries that do not collect baso-cellular skin carcinomas, the incidence of double presentation of invasive skin tumours:\",\n    \"clusion_E\": \"baso-cellular skin carcinoma and, separately, with baso-cellular skin carcinoma.\"\n}","data_kind":"['Clinical data','Socio-demographic data']","quality_statement":{"standards":[{"name":"['CIM-0-3, CIM-10']","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":"['Through organizations (health services or institutions, schools, businesses, etc.)']"}},"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":">= 20000 individuals","response_rate":"110 000"},"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\":\"To be defined\",\"extLink\":[]}"},"dataset_use":{"restrictions":"","conditions":"","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":"22-11-2012","lastUpdatedAuto":null,"lastUpdatedManual":"30-07-2014","isContributorPI":false,"contributorName":"Antoine BUEMI","contributorAffiliation":"GROUPE HOSPITALIER DE LA REGION DE MULHOUSE ET SUD ALSACE (GHRMSA)","addTeamMember":"","obtainedAuthorization":{"otherAuthorizingAgency":[]},"relatedDocument":[],"regulatoryRequirements":{"conformityDeclaration":""},"fundingAgent":{"fundingAgentType":["Public (France)","Public (France)","Public (France)","Public (France)","Public (France)","Private non-profit"],"otherFundingAgentType":["","","","","",""]},"sponsor":{"sponsorType":["Private non-profit"],"otherSponsorType":[""]},"governance":{"committee":""},"collaborations":{"networkConsortium":""},"theme":{"complementaryInformation":"","RareDiseases":""},"activeFollowUp":{"isActiveFollowUp":false,"followUpModeOther":""},"interventionalStudy":{"researchPurpose":[],"trialPhase":[],"interventionalStudyModel":"","isClinicalTrial":"","otherResearchPurpose":""},"isInclusionGroups":"","allocation":{"allocationMode":"","allocationUnit":""},"masking":{"maskingType":"","blindedMaskingDetails":[]},"arms":[],"intervention":[],"inclusionGroups":[],"collectionProcess":{"collectionModeDetails":"Cases are identified by epidemiological record which includes: date of onset of cancer, anatomical site, histological type, diagnosis conditions, initial assessment of extension, the existence of a known prior cancer, identification of site of diagnosis, information sources, vital status information.","collectionModeOther":""},"dataCollection":{"inclusionStrategyOther":"","samplingModeOther":"","recruitmentSourceOther":"","otherDocumentation":""},"dataCollectionIntegration":{"isDataIntegration":false},"geographicalCoverage":{"geoDetail":"Haut-Rhin"},"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"}