{"doc_desc":{"title":"registre multicentrique \u00e0 vocation nationale des m\u00e9soth\u00e9liomes pleuraux (registre qualifi\u00e9 2013-2016)","idno":"FRESH-PEF227-fr","producers":[{"name":"Fran\u00e7oise GALATEAU-SALLE","affiliation":"chu"}]},"study_desc":{"title_statement":{"idno":"FRESH-PEF227-fr","IDno":{"metadata_no":[{"agency":"PEF","code":"227"},{"agency":"FReSH","code":"FRESH-PEF227"}]},"title":"registre multicentrique \u00e0 vocation nationale des m\u00e9soth\u00e9liomes pleuraux (registre qualifi\u00e9 2013-2016)","alternate_title":"MESONAT"},"study_authorization":{"agency":[{"name":"CNIL"}]},"authoring_entity":[{"type":"investigator","name":"Fran\u00e7oise;GALATEAU-SALLE","PILabo":"CHU \/ Groupe M\u00e9sopath. Laboratoire d'ANATOMIE PATHOLOGIQUE, CHU CAEN 14033 Caen CedexERI 3 Inserm \u2018\u2019Cancers et Populations\u2019\u2019","affiliationName":"chu","extlink":[{"title":"ORCID","uri":"0000-0002-2814-1644","role":"pi id"},{"title":"IdRef","uri":"069734135","role":"pi id"},{"title":"SIREN","uri":"261400931","role":"organisation id"},{"title":"","uri":"","role":"labo id"}],"email":"","isContact":"Non"}],"oth_id":[{"name":""}],"production_statement":{"prod_place":"Portail Epid\u00e9miologie France (PEF)","producers":[{"name":"CENTRE HOSPITALIER UNIVERSITAIRE DE CAEN NORMANDIE (CHU)","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/027arzy69","role":"sponsor id"},{"title":"SIREN","uri":"261400931","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":"","type":"contact"}]},"study_info":{"keywords":[{"keyword":"amiante"},{"keyword":"autres fibres"},{"keyword":"irradiation"},{"keyword":"g\u00e9n\u00e9tique."},{"keyword":"environnement"}],"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"}]},{"topic":"M\u00e9soth\u00e9liome de la pl\u00e8vre","vocab":"cim-11","extLink":[{"uri":"http:\/\/id.who.int\/icd\/entity\/369414280","title":"CIM-11"}]},{"topic":"D\u00e9terminants li\u00e9s au syst\u00e8me de sant\u00e9 : Consommation des soins","vocab":"health determinant"},{"topic":"D\u00e9terminants socio-d\u00e9mographiques et \u00e9conomiques : Emploi","vocab":"health determinant"},{"topic":"D\u00e9terminants li\u00e9s au syst\u00e8me de sant\u00e9","vocab":"health determinant"},{"topic":"D\u00e9terminants socio-d\u00e9mographiques et \u00e9conomiques","vocab":"health determinant"}],"purpose":"Le registre est l\u2019\u00e9l\u00e9ment central du PNSM (Programme National de Surveillance des M\u00e9soth\u00e9liomes), et constitue l\u2019outil de base du dispositif national de surveillance \u00e9pid\u00e9miologique du m\u00e9soth\u00e9liome \u00e0 des fins de sant\u00e9 publique. Cette surveillance comporte notamment les volets : - Estimation de l\u2019incidence nationale : un ratio incidence\/mortalit\u00e9 est \u00e9tabli \u00e0 partir des donn\u00e9es des d\u00e9partements couverts par le registre et appliqu\u00e9 aux donn\u00e9es de mortalit\u00e9 nationales par classe d\u2019\u00e2ge, France enti\u00e8re, chez les hommes et les femmes s\u00e9par\u00e9ment. - Am\u00e9lioration du diagnostic anatomopathologique du m\u00e9soth\u00e9liome - Description des secteurs d\u2019activit\u00e9 et des professions \u00e0 risque pour la survenue du m\u00e9soth\u00e9liome chez l\u2019homme : les secteurs d\u2019activit\u00e9 \u00e9conomique et les professions sont class\u00e9s selon l\u2019importance du risque de m\u00e9soth\u00e9liome pleural. - \u00c9tablissement de fractions attribuables : la fraction de risque attribuable \u00e0 une exposition professionnelle \u00e0 l\u2019amiante chez l\u2019homme a \u00e9t\u00e9 estim\u00e9e globalement \u00e0 83,2 % (IC 95 % : 76,8-89,6) ; des analyses plus d\u00e9taill\u00e9es sont pr\u00e9vues. - \u00c9valuation de la prise en charge du m\u00e9soth\u00e9liome au titre des maladies professionnelles ; c\u2019est un autre axe d\u2019analyse syst\u00e9matique, en raison du taux de reconnaissance globalement insuffisant.","abstract":"","coll_dates":[{"start":"1998-01-01"}],"nation":[{"name":"France","abbreviation":"fr","extLink":{"vocab":"ISO","vocabURI":"fr"}}],"geog_coverage":"","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\": \"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\": \"Les cas enregistr\u00e9s sont des patients r\u00e9sidant dans les d\u00e9partements d\u00e9crits ci-dessous qui ont pr\u00e9sent\u00e9 une premi\u00e8re suspicion de m\u00e9soth\u00e9liome pleural de 1998 \u00e0 l\u2019ann\u00e9e en cours.\",\n    \"clusion_E\": \"\"\n}","data_kind":"['Donn\u00e9es cliniques','Donn\u00e9es paracliniques','Donn\u00e9es biologiques','Donn\u00e9es socio-d\u00e9mographiques']","quality_statement":{"standards":[{"name":"['CIM0\/CIM10\/ADICAP']","committee":"","governance":""}],"other_quality_statement":""}},"study_development":{"development_activity":[{"activity_type":"primary evaluation","activity_description":"Ev\u00e9nements de sant\u00e9\/morbidit\u00e9\r\nEv\u00e9nements de sant\u00e9\/mortalit\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":"< 500 individus","response_rate":"1998-2006 : 1900 (238\/an\/year)"},"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":"","status":"{\"value\":\"Acc\u00e8s r\u00e9serv\u00e9\",\"extLink\":[{\"title\":\"COAR\",\"uri\":\"http:\/\/purl.org\/coar\/access_right\/c_16ec\"}]}"},"dataset_use":{"restrictions":"","conditions":"","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":"03-01-2011","lastUpdatedAuto":null,"lastUpdatedManual":"23-01-2015","isContributorPI":"Non","contributorName":"","contributorAffiliation":"","addTeamMember":"","obtainedAuthorization":{"otherAuthorizingAgency":[""]},"relatedDocument":[],"regulatoryRequirements":{"conformityDeclaration":""},"fundingAgent":{"fundingAgentType":["Public (France)"],"otherFundingAgentType":[""]},"sponsor":{"sponsorType":["Public (France)"],"otherSponsorType":[""]},"governance":{"committee":""},"collaborations":{"networkConsortium":""},"theme":{"complementaryInformation":"","RareDiseases":"Oui"},"activeFollowUp":{"isActiveFollowUp":"Oui","followUpModeOther":""},"interventionalStudy":{"researchPurpose":[],"trialPhase":[],"interventionalStudyModel":"","isClinicalTrial":"","otherResearchPurpose":""},"isInclusionGroups":"","allocation":{"allocationMode":"","allocationUnit":""},"masking":{"maskingType":"","blindedMaskingDetails":[]},"arms":[],"intervention":[],"inclusionGroups":[],"collectionProcess":{"collectionModeDetails":"courriers, mail, visites, t\u00e9l\u00e9phones, recueil passif.","collectionModeOther":""},"dataCollection":{"inclusionStrategyOther":"","samplingModeOther":"","recruitmentSourceOther":"","otherDocumentation":""},"dataCollectionIntegration":{"isDataIntegration":"Non"},"geographicalCoverage":{"geoDetail":"Les d\u00e9partements participants au registre sont au nombre de 22 en 2008 (Calvados (14), Dordogne (24), Doubs (25), Gironde (33), Is\u00e8re (38), Landes (40), Loire-Atlantique (44), Lot-et-Garonne (47), Manche (50), Orne (61), Pyr\u00e9n\u00e9es-Atlantiques (64), Bas-Rhin (67), Haut-Rhin (68), Somme (80), Bouches-du-Rh\u00f4ne (13), Var (83) et Seine-Saint-Denis (93), Val-de-Marne (94), Alpes-Maritimes (06), Haute-Corse (2B), Corse-du-Sud (2A) et Seine-Maritime (76)."},"dataTypes":{"clinicalDataDetails":"> Ant\u00e9c\u00e9dents de cancer > Tumeur: lieu, la date du diagnostic initial, la date du premier \u00e9chantillon, l'\u00e9chantillon date d'enregistrement, la m\u00e9thode de diagnostic (clinique et biologique, paraclinique, cytologie \/ histologie), la morphologie de la tumeur, le grade OMS, taille de la tumeur, le stade de la tumeur, les m\u00e9tastases > Traitements: date du premier traitement, la chirurgie, la chimioth\u00e9rapie, la radioth\u00e9rapie, les soins palliatifs","biologicalDataDetails":"marqueurs","isDataInBiobank":"Oui","biobankContent":[],"biobankContentOther":"","dataTypeOther":""},"variableDictionnary":{"variableDictionnaryAvailable":"","variableDictionnaryLink":""},"dataQuality":{"otherDocumentation":""},"mockSample":{"mockSampleAvailable":"","mockSampleLocation":""},"thirdPartySource":{"otherSourceType":[]},"isHealthTheme":"Oui","fileDscr":{"fileTxt":{"fileCitation":{"titlStmt":{"IDno":[]}}}}},"schematype":"survey"}