{"doc_desc":{"title":"Registre du cancer de la Somme (registre qualifi\u00e9 2013-2016)","idno":"FRESH-PEF202-fr","producers":[{"name":"Olivier GANRY","affiliation":"chu"}]},"study_desc":{"title_statement":{"idno":"FRESH-PEF202-fr","IDno":{"metadata_no":[{"agency":"PEF","code":"202"},{"agency":"FReSH","code":"FRESH-PEF202"}]},"title":"Registre du cancer de la Somme (registre qualifi\u00e9 2013-2016)","alternate_title":""},"study_authorization":{"agency":[{"name":"CNIL"}]},"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":"Oui"},{"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":"Oui"}],"oth_id":[{"name":""}],"production_statement":{"prod_place":"Portail Epid\u00e9miologie France (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":"survie"}],"topics":[{"topic":"Oncologie","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":"Objectifs du registre en termes de sant\u00e9 publique (surveillance, \u00e9valuation) : 1) Le but premier d\u2019un registre est de produire, par un recensement actif et exhaustif des cas, des donn\u00e9es permettant le calcul d\u2019indicateurs de surveillance de l\u2019\u00e9tat de sant\u00e9 des populations (incidence, survie et pr\u00e9valence); 2) Les donn\u00e9es ainsi produites sont \u00e9galement \u00e0 destination des institutionnels, et notamment des d\u00e9cideurs et des partenaires locaux, afin d\u2019apporter l\u2019expertise n\u00e9cessaire au d\u00e9partement et \u00e0 la R\u00e9gion concernant la pathologie canc\u00e9reuse, en participant \u00e0 plusieurs structures (Comit\u00e9 Technique R\u00e9gional en Canc\u00e9rologie, Comit\u00e9 des d\u00e9pistages, R\u00e9seau R\u00e9gional de Canc\u00e9rologie ONCOPIC\u2026). Le Registre participe aux \u00e9tudes coop\u00e9ratives men\u00e9es dans le cadre des r\u00e9seaux FRANCIM et EUROCARE visant \u00e0 \u00e9valuer les pratiques m\u00e9dicales en population, la diffusion des recommandations; 3) Le registre est \u00e9galement un outil permettant d\u2019\u00e9valuer l\u2019efficacit\u00e9 des campagnes de d\u00e9pistage organis\u00e9es dans le d\u00e9partement depuis 1990 pour le cancer du sein et 2007 pour le cancer colorectal. Il permet de suivre l\u2019\u00e9volution des taux d\u2019incidence, la proportion de faux n\u00e9gatifs, les cancers d\u2019intervalle. Objectifs du registre en termes de recherche : 1) Evaluer l\u2019impact des mesures de sant\u00e9 publique (programmes de d\u00e9pistages organis\u00e9s, programmes r\u00e9gionaux de sant\u00e9\u2026); 2) Evaluer les pratiques m\u00e9dicales dans le cadre d\u2019\u00e9tudes sp\u00e9cifiques (\u00e9tudes haute r\u00e9solution); 3) D\u00e9velopper des \u00e9tudes sur les d\u00e9terminants socio-\u00e9conomiques sur la survie et le comportement des patients atteints de cancer (ex de l\u2019\u00e9tude VADS canc\u00e9rop\u00f4le Nord-Ouest en cours, ou projet d\u2019\u00e9tude sur le cancer du sein dans le d\u00e9partement de la Somme) afin de mieux appr\u00e9hender les in\u00e9galit\u00e9s d\u2019acc\u00e8s ou de recours aux soins particuli\u00e8rement pr\u00e9gnantes dans le d\u00e9partement de la Somme, ou encore appr\u00e9hender \u00e0 partir des zones grand IRIS de la Ville d\u2019Amiens, les diff\u00e9rences d\u2019incidence et de types de cancers, dans le cadre de travaux collaboratifs avec la ville d\u2019Amiens et l\u2019ORS; 4) Etudier la probl\u00e9matique de la r\u00e9insertion professionnelle apr\u00e8s cancer \u00e0 travers l\u2019axe de recherche du canc\u00e9rop\u00f4le \u00ab soins, prise en charge et survie des patients atteints de cancer \u00bb; 5) D\u00e9velopper des travaux d\u2019\u00e9pid\u00e9miologie mol\u00e9culaire au sein de la Jeune Equipe 2530 sur le cancer du sein (R\u00f4le des canaux ioniques, des hormones et des facteurs de croissance dans le cancer du sein); 6) Enqu\u00eate en cours sur la qualit\u00e9 de vie des personnes \u00e0 distance d'un cancer de la prostate diagnostiqu\u00e9 en 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":"Individus","universe":"{\n    \"level_sex_clusion_I\": [\n        {\n            \"value\": \"Masculin\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D008297\"\n            }\n        },\n        {\n            \"value\": \"F\u00e9minin\",\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\": \"Nouveau-n\u00e9 (naissance \u00e0 28j)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D007231\"\n            }\n        },\n        {\n            \"value\": \"Nourrisson (28j \u00e0 2 ans)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D007223\"\n            }\n        },\n        {\n            \"value\": \"Petite enfance (2 \u00e0 5 ans)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D002675\"\n            }\n        },\n        {\n            \"value\": \"Enfance (6 \u00e0 12 ans)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D002648\"\n            }\n        },\n        {\n            \"value\": \"Adolescence (13 \u00e0 18 ans)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D000293\"\n            }\n        },\n        {\n            \"value\": \"Adulte (19 \u00e0 24 ans)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D055815\"\n            }\n        },\n        {\n            \"value\": \"Adulte (25 \u00e0 44 ans)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D000328\"\n            }\n        },\n        {\n            \"value\": \"Adulte (45 \u00e0 64 ans)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D008875\"\n            }\n        },\n        {\n            \"value\": \"Personne \u00e2g\u00e9e (65 \u00e0 79 ans)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D000368\"\n            }\n        },\n        {\n            \"value\": \"Grand \u00e2ge (80 ans et plus)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D000369\"\n            }\n        }\n    ],\n    \"level_type_clusion_I\": \"Patients\",\n    \"level_type_clusion_other\": \"\",\n    \"clusion_I\": \"Toutes les tumeurs malignes ou in situ primitives chez toute personne domicili\u00e9e dans le d\u00e9partement de la Somme au moment du diagnostic, quelque soit leur lieu de prise en charge, sont enregistr\u00e9es. En outre, les tumeurs de vessie non infiltrantes sont syst\u00e9matiquement enregistr\u00e9es ainsi que les tumeurs b\u00e9nignes et de malignit\u00e9 interm\u00e9diaire du syst\u00e8me nerveux central et les tumeurs border-line de l\u2019ovaire. Les tumeurs basocellulaires de la peau sont exclues. Les tumeurs multiples chez un m\u00eame sujet sont enregistr\u00e9es, m\u00eame si elles surviennent simultan\u00e9ment dans des organes pairs ou dans des sous-localisations d\u2019un m\u00eame organe.\",\n    \"clusion_E\": \"Les tumeurs basocellulaires de la peau sont exclues.\"\n}","data_kind":"['Donn\u00e9es cliniques','Donn\u00e9es paracliniques','Donn\u00e9es biologiques','Donn\u00e9es socio-d\u00e9mographiques']","quality_statement":{"standards":[{"name":"['CIMO-3 (classification internationale des maladies en oncologie, 3\u00e8me version)']","committee":"","governance":""}],"other_quality_statement":""}},"study_development":{"development_activity":[{"activity_type":"primary evaluation","activity_description":"Ev\u00e9nements de sant\u00e9\/morbidit\u00e9"}]},"method":{"data_collection":{"time_method":"","frequency":"","sampling_procedure":"['{\"concept\":{\"vocabURI\":\"Other\",\"vocab\":\"CESSDA\"},\"value\":\"Autre\"}']","sample_frame":{"frame_unit":{"unit_type":""}},"coll_mode":["{\"concept\":{\"vocabURI\":\"Interview\",\"vocab\":\"CESSDA\"},\"value\":\"Entretien avec le participant (dont clinique)\"}"],"research_instrument":"Acc\u00e8s restreint sur projet sp\u00e9cifique","sources":[],"target_sample_size":">= 20000 individus","response_rate":"1982- 2008: 58511 patients distincts et 63400 tumeurs invasives comptabilis\u00e9es pour l'incidence (r\u00e8gles ENCR et valeurs au 1er janvier 2011)1982- 2008: 58,511 separate patients and 63,400 invasive tumors counted for incidence (ENCR rules and values as at January 1st, 2011)"},"method_notes":"Etude observationnelle","study_class":"Inconnu","notes":[{"subject":"research type","values":["Etude observationnelle"]},{"subject":"observational study method","values":["Registre de morbidit\u00e9"]}]},"data_access":{"dataset_availability":{"access_place":"","complete":"Les donn\u00e9es communiqu\u00e9es par le registre sont anonymes.","status":"{\"value\":\"Acc\u00e8s r\u00e9serv\u00e9\",\"extLink\":[{\"title\":\"COAR\",\"uri\":\"http:\/\/purl.org\/coar\/access_right\/c_16ec\"}]}"},"dataset_use":{"restrictions":"","conditions":"Contacter le responsable du registre, soumettre un protocole ou d\u00e9crire le projet et ses objectifs.","conf_dec":[{"txt":""}],"spec_perm":[{"txt":"","required":""}],"contact":[{"name":""}],"deposit_req":"","cit_req":""},"notes":""}},"additional":{"IsImport":true,"versionLang":"fr","originLang":"fr","autoTranslation":false,"status":"imported","creationDate":"20-12-2010","lastUpdatedAuto":null,"lastUpdatedManual":"03-04-2012","isContributorPI":"Non","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":"Oui","followUpModeOther":""},"interventionalStudy":{"researchPurpose":[],"trialPhase":[],"interventionalStudyModel":"","isClinicalTrial":"","otherResearchPurpose":""},"isInclusionGroups":"","allocation":{"allocationMode":"","allocationUnit":""},"masking":{"maskingType":"","blindedMaskingDetails":[]},"arms":[],"intervention":[],"inclusionGroups":[],"collectionProcess":{"collectionModeDetails":"Demande par mail (informations crypt\u00e9es), courrier ou t\u00e9l\u00e9phone de listes nominatives informatiques ou papierpuis consultation sur place dans les lieux de soins des dossiers m\u00e9dicaux, selon les cas solliciation des m\u00e9decins impliqu\u00e9s dans la prise en chargeCollaboration avec les services d'\u00e9tat civil des communes pour le suivi du statut vital","collectionModeOther":""},"dataCollection":{"inclusionStrategyOther":"","samplingModeOther":"","recruitmentSourceOther":"","otherDocumentation":""},"dataCollectionIntegration":{"isDataIntegration":"Non"},"geographicalCoverage":{"geoDetail":"D\u00e9partement de la Somme"},"dataTypes":{"clinicalDataDetails":"","biologicalDataDetails":"PSA, h\u00e9mogramme","isDataInBiobank":"Non","biobankContent":[],"biobankContentOther":"","dataTypeOther":""},"variableDictionnary":{"variableDictionnaryAvailable":"","variableDictionnaryLink":""},"dataQuality":{"otherDocumentation":""},"mockSample":{"mockSampleAvailable":"","mockSampleLocation":""},"thirdPartySource":{"otherSourceType":[]},"isHealthTheme":"Oui","fileDscr":{"fileTxt":{"fileCitation":{"titlStmt":{"IDno":[]}}}}},"schematype":"survey"}