{"doc_desc":{"title":"Cancer Registry of French Guiana (certified cancer registry)","idno":"FRESH-PEF63-en","producers":[{"name":" Registre des cancers de Guyane","affiliation":"UNION REG DES MEDECINS LIBERAUX DE GUYAN (URMLG)"}]},"study_desc":{"title_statement":{"idno":"FRESH-PEF63-en","IDno":{"metadata_no":[{"agency":"PEF","code":"63"},{"agency":"FReSH","code":"FRESH-PEF63"}]},"title":"Cancer Registry of French Guiana (certified cancer registry)","alternate_title":"RCG"},"study_authorization":{"agency":[]},"authoring_entity":[{"type":"investigator","name":"Sylvain;LABBE","PILabo":"Centre Hospitalier Andr\u00e9e Rosemon \/ Laboratoire d'Anatomie et pathologie","affiliationName":"CENTRE HOSPITALIER DE CAYENNE","extlink":[{"title":"ORCID","uri":"0000-0002-1115-0229","role":"pi id"},{"title":"","uri":"","role":"pi id"},{"title":"SIREN","uri":"269733028","role":"organisation id"},{"title":"","uri":"","role":"labo id"}],"email":"sylvain.labbe@inrae.fr","isContact":"Yes"},{"type":"investigator","name":"Fabrice;QUET","PILabo":"Registre des cancers de Guyane - URPS M\u00e9decin de Guyane","affiliationName":"UNION REG DES MEDECINS LIBERAUX DE GUYAN (URMLG)","extlink":[{"title":"ORCID","uri":"0000-0003-4777-5527","role":"pi id"},{"title":"IdRef","uri":"150015453","role":"pi id"},{"title":"SIREN","uri":"410232409","role":"organisation id"},{"title":"","uri":"","role":"labo id"}],"email":"fabrice_quet@hotmail.com","isContact":"Yes"}],"oth_id":[{"name":""}],"production_statement":{"prod_place":"Epidemiology France Portal (PEF)","producers":[{"name":"AGENCE REGIONALE SANTE DE GUYANE (ARS)","extlink":[{"title":"SIREN","uri":"130007859","role":"sponsor id"}],"role":"sponsor"}],"funding_agencies":[{"name":"AGENCE REGIONALE SANTE DE GUYANE (ARS)","extlink":[{"title":"SIREN","uri":"130007859"}]}]},"distribution_statement":{"contact":[{"name":"Sylvain;LABBE","email":"sylvain.labbe@inrae.fr","type":"contact","affiliationName":"CENTRE HOSPITALIER DE CAYENNE","contactPointLabo":"","extlink":[{"uri":"269733028","role":"organisation id","title":"SIREN"}]},{"name":"Fabrice;QUET","email":"fabrice_quet@hotmail.com","type":"contact","affiliationName":"UNION REG DES MEDECINS LIBERAUX DE GUYAN (URMLG)","contactPointLabo":"","extlink":[{"uri":"410232409","role":"organisation id","title":"SIREN"}]}]},"study_info":{"keywords":[{"keyword":"tumors"},{"keyword":"French Guiana"},{"keyword":"cancer"}],"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":"1) Take a rigorous and complete inventory of the incidence, survival and prevalence of cancers in French Guiana, carry out expertise in order to evaluate and check the impact and change over time and in space of these pathologies. 2) Analyze geographical variations and study the etiologic factors of cancer in French Guiana. 3) Allow the Guianese Association for Organized Screening of Cancer (AGDOC) to set up mass organized screenings and to evaluate their impact on the incidence of cancer in French Guiana (breast, colon and uterine cervix). 5) Encourage structures and stakeholders in public health in the d\u00e9partement to coordinate their strategies by using the registry's socio-economic data.","abstract":"","coll_dates":[{"start":"2005-01-01"}],"nation":[{"name":"France","abbreviation":"fr","extLink":{"vocab":"ISO","vocabURI":"fr"}}],"geog_coverage":"['Guyane']","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 objective of the registry is to compile all patients living in French Guiana with malignant invasive pathology and\\\/or in situ lesions starting January 1st 2003 in persons living in French Guiana, whatever the tumoral location and the place of diagnosis and care.\",\n    \"clusion_E\": \" Benign tumours, recurrences and metastases, and cancers of patients residing outside of French Guiana are excluded. Cutaneous basocellular carcinoma and pituitary gland tumours are excluded.\"\n}","data_kind":"['Clinical data','Biological data','Socio-demographic data','Paraclinical data (non-biological) : Imaging']","quality_statement":{"standards":[{"name":"['Coding for required and recommended variables is carried out by following the strict rules set down by FRANCIM network and ENCR. Topography and morphology are coded according to the International Classification of Diseases for Oncology, third edition (ICD-O-3). The stage at diagnosis (TNM) is coded according to the classification of the Union for International Cancer Control (UICC) concerning the years studied.']","committee":"","governance":""}],"other_quality_statement":""}},"study_development":{"development_activity":[{"activity_type":"primary evaluation","activity_description":"Health event\/morbidity\r\nHealth care consumption and services"}]},"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\":\"Other\",\"vocab\":\"CESSDA\"},\"value\":\"Other\"}"],"research_instrument":"Access on specific project only","sources":[],"target_sample_size":"[1000-10000[ individuals","response_rate":"2953 cancer cases from 2003 to 2008"},"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 results of the cancer incidence calculations for the population residing in French Guiana can be accessed in the Registry. For any specific request concerning the use of the data, please contact us at the following address: registre-guyane@wanadoo.fr","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":"13-12-2010","lastUpdatedAuto":null,"lastUpdatedManual":"28-09-2018","isContributorPI":"No","contributorName":" Registre des cancers de Guyane","contributorAffiliation":"UNION REG DES MEDECINS LIBERAUX DE GUYAN (URMLG)","addTeamMember":"","obtainedAuthorization":{"otherAuthorizingAgency":[]},"relatedDocument":[],"regulatoryRequirements":{"conformityDeclaration":""},"fundingAgent":{"fundingAgentType":["Public (France)"],"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":"Active","collectionModeOther":""},"dataCollection":{"inclusionStrategyOther":"","samplingModeOther":"","recruitmentSourceOther":"","otherDocumentation":""},"dataCollectionIntegration":{"isDataIntegration":"No"},"geographicalCoverage":{"geoDetail":"French Guiana"},"dataTypes":{"clinicalDataDetails":"patient medical history","biologicalDataDetails":"anatomo-cyto-pathological reports, tumor markers, immuno-histochemical analyses","isDataInBiobank":"No","biobankContent":[],"biobankContentOther":"","dataTypeOther":""},"variableDictionnary":{"variableDictionnaryAvailable":"","variableDictionnaryLink":""},"dataQuality":{"otherDocumentation":""},"mockSample":{"mockSampleAvailable":"","mockSampleLocation":""},"thirdPartySource":{"otherSourceType":[]},"isHealthTheme":"Yes","fileDscr":{"fileTxt":{"fileCitation":{"titlStmt":{"IDno":[]}}}}},"schematype":"survey"}