{"doc_desc":{"title":"Somme Cancer Registry (Certified Registry 2013-2016)","idno":"FRESH-PEF202-en","producers":[{"name":"Olivier GANRY","affiliation":"chu"}]},"study_desc":{"title_statement":{"idno":"FRESH-PEF202-en","IDno":{"metadata_no":[{"agency":"PEF","code":"202"},{"agency":"FReSH","code":"FRESH-PEF202"}]},"title":"Somme Cancer Registry (Certified Registry 2013-2016)","alternate_title":""},"study_authorization":{"agency":[]},"authoring_entity":[{"type":"investigator","name":"Olivier;GANRY","PILabo":"CHU \/ Service Epid\u00e9miologie Hygi\u00e8ne et Sant\u00e9 Publique","affiliationName":"chu","extlink":[{"title":"","uri":"","role":"pi id"},{"title":"IdRef","uri":"069535981","role":"pi id"},{"title":"SIREN","uri":"268000148","role":"organisation id"},{"title":"","uri":"","role":"labo id"}],"email":"ganry.olivier@chu-amiens.fr","isContact":"Yes"},{"type":"investigator","name":"B\u00e9n\u00e9dicte;LAPOTRE","PILabo":"CHU \/ Service Epid\u00e9miologie Hygi\u00e8ne et Sant\u00e9 Publique","affiliationName":"chu","extlink":[{"title":"","uri":"","role":"pi id"},{"title":"","uri":"","role":"pi id"},{"title":"SIREN","uri":"268000148","role":"organisation id"},{"title":"","uri":"","role":"labo id"}],"email":"lapotre-ledoux.benedicte@chu-amiens.fr","isContact":"Yes"}],"oth_id":[{"name":""}],"production_statement":{"prod_place":"Epidemiology France Portal (PEF)","producers":[{"name":"CENTRE HOSPITALIER UNIVERSITAIRE AMIENS-PICARDIE","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/010567a58","role":"sponsor id"},{"title":"SIREN","uri":"268000148","role":"sponsor id"}],"role":"sponsor"}],"funding_agencies":[{"name":""}]},"distribution_statement":{"contact":[{"name":"Olivier;GANRY","email":"ganry.olivier@chu-amiens.fr","type":"contact","affiliationName":"chu","contactPointLabo":"","extlink":[{"uri":"https:\/\/ror.org\/010567a58","role":"organisation id","title":"ROR"},{"uri":"268000148","role":"organisation id","title":"SIREN"}]},{"name":"B\u00e9n\u00e9dicte;LAPOTRE","email":"lapotre-ledoux.benedicte@chu-amiens.fr","type":"contact","affiliationName":"chu","contactPointLabo":"","extlink":[{"uri":"https:\/\/ror.org\/010567a58","role":"organisation id","title":"ROR"},{"uri":"268000148","role":"organisation id","title":"SIREN"}]}]},"study_info":{"keywords":[{"keyword":"incidence"},{"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":"Objectives of the registry in terms of public health (surveillance, evaluation): 1) Via an active and exhaustive listing of cases, a registry's main objective is to produce data enabling the calculation of indicators for monitoring the health of populations (incidence, survival and prevalence); 2) Such data is also made available to institutions - particularly decision-makers and local partners - to provide the d\u00e9partement and Region with the necessary cancer-related expertise, by participating in various bodies (Regional Technical Committee for Oncology, Screening Committee, Regional Oncology Network ONCOPIC, etc.). The Registry takes part in cooperative research conducted via the FRANCIM and EUROCARE networks aimed at assessing medical practices within the population and disseminating recommendations; 3) The registry is also a tool for evaluating the efficacy of the screening campaigns organised in the d\u00e9partement since 1990 for breast cancer and 2007 for colorectal cancer. It keeps track of incidence rate trends, the proportion of false negatives and interval cancers. Objectives of the registry in terms of research: 1) Evaluate the impact of public healthcare measurememts (organised screening programmes, regional health programmes, etc.); 2) Evaluate medical practices in the context of specific studies (high-resolution studies); 3) Develop research on the socioeconomic determining factors of survival and behaviour in cancer patients (e.g. the North-West canceropole VADS study underway, or planned breast cancer study in the Somme d\u00e9partement) for a clearer understanding of the particularly marked disparities in healthcare access or use in the Somme d\u00e9partement and to pinpoint the differences - from the city of Amiens' large IRIS zones (grouped areas for statistical information) - in incidence and types of cancer through work carried out jointly with the city of Amiens and the Regional Health Observatory (ORS); 4) Examine the issue of finding work again after cancer through the research theme of the canceropole care, reimbursement and survival of cancer patients; 5) Develop molecular epidemiology research within Young Team 2530 on breast cancer (Role of ion channels, hormones and growth factors in breast cancer); 6) Ongoing distance survey into the quality of life of people suffering from prostate cancer, diagnosed in 2001, QALIPRO.","abstract":"","coll_dates":[{"start":"1982-01-01"}],"nation":[{"name":"France","abbreviation":"fr","extLink":{"vocab":"ISO","vocabURI":"fr"}}],"geog_coverage":"['Hauts-de-France']","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 in situ or malignant tumors in anyone living in the Somme d\u00e9partement at the time of diagnosis, irrespective of where they are receiving treatment, are recorded. Moreover, non-invasive bladder tumours are systematically recorded, as well as benign tumours and tumours of intermediate malignancy of the central nervous system, and borderline tumours of the ovary. Basocellular skin carcinoma are excluded. Multiple tumours in the same subject are recorded, even if they occur simultaneously in paired organs or sub-locations of the same organ.\",\n    \"clusion_E\": \"Basocellular skin carcinoma are excluded.\"\n}","data_kind":"['Clinical data','Biological 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\":\"Interview\",\"vocab\":\"CESSDA\"},\"value\":\"Interview with the participant (including clinical)\"}"],"research_instrument":"Access on specific project only","sources":[],"target_sample_size":">= 20000 individuals","response_rate":"1982- 2008: 58,511 separate patients and 63,400 invasive tumours recorded by incidence (ENCR regulations and values on 01 January 2011)."},"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":"The data communicated by the registry is anonymous.","status":"{\"value\":\"Restricted access\",\"extLink\":[{\"title\":\"COAR\",\"uri\":\"http:\/\/purl.org\/coar\/access_right\/c_16ec\"}]}"},"dataset_use":{"restrictions":"","conditions":"Contact the person in charge of the registry, submit protocol or describe the project and its objectives.","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":"03-04-2012","isContributorPI":"No","contributorName":"Olivier GANRY","contributorAffiliation":"CENTRE HOSPITALIER UNIVERSITAIRE AMIENS-PICARDIE","addTeamMember":"","obtainedAuthorization":{"otherAuthorizingAgency":[]},"relatedDocument":[{"type":"","title":"","link":"http:\/\/www.ncbi.nlm.nih.gov\/pubmed?term"}],"regulatoryRequirements":{"conformityDeclaration":""},"fundingAgent":{"fundingAgentType":[],"otherFundingAgentType":[]},"sponsor":{"sponsorType":["Public (France)"],"otherSponsorType":[""]},"governance":{"committee":""},"collaborations":{"networkConsortium":""},"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":"Request by email (encrypted information), post or telephone for electronic or paper nominative lists; then on-site consultation in medical record care centres and, depending on the case, referral to the physicians involved in treatment. Cooperation with municipal registry offices for monitoring vital status","collectionModeOther":""},"dataCollection":{"inclusionStrategyOther":"","samplingModeOther":"","recruitmentSourceOther":"","otherDocumentation":""},"dataCollectionIntegration":{"isDataIntegration":"No"},"geographicalCoverage":{"geoDetail":"Somme d\u00e9partement."},"dataTypes":{"clinicalDataDetails":"","biologicalDataDetails":"PSA, complete blood count.","isDataInBiobank":"No","biobankContent":[],"biobankContentOther":"","dataTypeOther":""},"variableDictionnary":{"variableDictionnaryAvailable":"","variableDictionnaryLink":""},"dataQuality":{"otherDocumentation":""},"mockSample":{"mockSampleAvailable":"","mockSampleLocation":""},"thirdPartySource":{"otherSourceType":[]},"isHealthTheme":"Yes","fileDscr":{"fileTxt":{"fileCitation":{"titlStmt":{"IDno":[]}}}}},"schematype":"survey"}