{"doc_desc":{"title":"Registre des tumeurs de l'H\u00e9rault (registre qualifi\u00e9 2010-2013)","idno":"FRESH-PEF223-fr","producers":[{"name":"","affiliation":""}]},"study_desc":{"title_statement":{"idno":"FRESH-PEF223-fr","IDno":{"metadata_no":[{"agency":"PEF","code":"223"},{"agency":"FReSH","code":"FRESH-PEF223"}]},"title":"Registre des tumeurs de l'H\u00e9rault (registre qualifi\u00e9 2010-2013)","alternate_title":""},"study_authorization":{"agency":[{"name":"CNIL"}]},"authoring_entity":[{"type":"investigator","name":"Brigitte;TRETARRE","PILabo":"","affiliationName":"ASSOC REGISTRE TUMEURS HERAULT","extlink":[{"title":"","uri":"","role":"pi id"},{"title":"IdRef","uri":"183117301","role":"pi id"},{"title":"SIREN","uri":"393593678","role":"organisation id"},{"title":"","uri":"","role":"labo id"}],"email":"registre-tumeur@wanadoo.fr","isContact":"Oui"}],"oth_id":[{"name":""}],"production_statement":{"prod_place":"Portail Epid\u00e9miologie France (PEF)","producers":[{"name":"INSTITUT REGIONAL DU CANCER DE MONTPELLIER (ICM)","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/00mrq0n58","role":"sponsor id"},{"title":"SIREN","uri":"788214963","role":"sponsor id"}],"role":"sponsor"}],"funding_agencies":[{"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"}]}]},"distribution_statement":{"contact":[{"name":"Brigitte;TRETARRE","email":"registre-tumeur@wanadoo.fr","type":"contact","affiliationName":"ASSOC REGISTRE TUMEURS HERAULT","contactPointLabo":"","extlink":[{"uri":"393593678","role":"organisation id","title":"SIREN"}]}]},"study_info":{"keywords":[{"keyword":"Survie"},{"keyword":"H\u00e9rault"},{"keyword":"Registre de population"},{"keyword":"Incidence"},{"keyword":"Mortalit\u00e9"}],"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":"D\u00e9terminants environnementaux : Autres","vocab":"health determinant"},{"topic":"D\u00e9terminants environnementaux","vocab":"health determinant"}],"purpose":"Objectifs du registre en termes de sant\u00e9 publique (surveillance, \u00e9valuation): Le registre des tumeurs est la seule structure qui puisse \u00e9valuer toutes les actions men\u00e9es depuis plus de 20 ans dans le d\u00e9partement dans le domaine de la pr\u00e9vention et du d\u00e9pistage (cancer du sein, cancer de la prostate, cancer du colon-rectum). Pour tous ces cancers, le registre suit leur incidence et leur survie dans le temps en fonction de tous les facteurs de pronostic, et permet de connaitre tous les cancers d\u2019intervalle survenus apr\u00e8s un examen de d\u00e9pistage n\u00e9gatif. - Objectifs du registre en termes de recherche: Le registre m\u00e8ne de nombreuses \u00e9tudes (isol\u00e9ment ou en collaboration avec les r\u00e9seaux fran\u00e7ais ou europ\u00e9en des registres) pour r\u00e9pondre aux besoins de connaissances \u00e9pid\u00e9miologiques : - Epid\u00e9miologie descriptive : toutes les donn\u00e9es sur le cancer dans l\u2019H\u00e9rault sont r\u00e9guli\u00e8rement publi\u00e9es et diffus\u00e9es \u00e0 l\u2019ensemble de la communaut\u00e9 m\u00e9dicale tous les deux ans, \u00e0 savoir : les donn\u00e9es d\u2019incidence et les donn\u00e9es de mortalit\u00e9. - Epid\u00e9miologie analytique : survie relative, pr\u00e9valence, \u00e9tudes de cohortes et cas-t\u00e9moins, cancers d\u2019intervalle. - Etudes de facteurs de pronostic : \u00e9tudes m\u00e9dico-\u00e9conomiques, \u00e9tudes sur les prises en charge th\u00e9rapeutiques et les fili\u00e8res de soins. Les donn\u00e9es du registre sont utilis\u00e9es pour les estimations de l\u2019incidence nationale et r\u00e9gionale des cancers en France, mais aussi pour les estimations de la pr\u00e9valence et pour l\u2019analyse de la survie r\u00e9alis\u00e9es au niveau fran\u00e7ais par le r\u00e9seau FRANCIM et au niveau europ\u00e9en par le groupe EUROCARE.","abstract":"","coll_dates":[{"start":"1985-01-01"}],"nation":[{"name":"France","abbreviation":"fr","extLink":{"vocab":"ISO","vocabURI":"fr"}}],"geog_coverage":"['Occitanie']","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 nouvelles tumeurs invasives, ainsi que les cancers in situ du sein, du col ut\u00e9rin, du colon-rectum, de la vessie et des m\u00e9lanomes de la peau, les pTa de vessie et les tumeurs b\u00e9nignes du Syst\u00e8me Nerveux Central, diagnostiqu\u00e9s chez les habitants de l\u2019H\u00e9rault, quelque soit leur lieu de prise en charge. Seuls les carcinomes baso-cellulaires de la peau sont exclus de l\u2019enregistrement. Les tumeurs controlat\u00e9rales du sein chez une m\u00eame patiente sont enregistr\u00e9es mais non comptabilis\u00e9es dans les cas incidents, et non envoy\u00e9es \u00e0 la base commune Francim, conform\u00e9ment aux r\u00e8gles d\u00e9finies par l\u2019ENCR (European Network Cancer Registry) et Francim (R\u00e9seau des registres de cancers fran\u00e7ais qualifi\u00e9s par le Comit\u00e9 National des Registres).\",\n    \"clusion_E\": \" Seuls les carcinomes baso-cellulaires de la peau sont exclus de l\u2019enregistrement\"\n}","data_kind":"['Donn\u00e9es cliniques','Donn\u00e9es paracliniques','Donn\u00e9es biologiques','Donn\u00e9es socio-d\u00e9mographiques','Donn\u00e9es paracliniques (hors biologiques) : Autre']","quality_statement":{"standards":[{"name":"","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\":\"Transcription\",\"vocab\":\"CESSDA\"},\"value\":\"Transcription et saisie d\u2019informations dans un enregistrement structur\u00e9\"}"],"research_instrument":"Acc\u00e8s libre","sources":[],"target_sample_size":">= 20000 individus","response_rate":"1987-2008: 96 535 patients, 104 252 cases (95 136 invasifs)"},"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":"Site Internet: donn\u00e9es t\u00e9l\u00e9chargeables","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":"30-12-2010","lastUpdatedAuto":null,"lastUpdatedManual":"12-06-2012","isContributorPI":"Non","contributorName":"","contributorAffiliation":"","addTeamMember":"","obtainedAuthorization":{"otherAuthorizingAgency":[""]},"relatedDocument":[{"type":"","title":"","link":"http:\/\/www.registre-tumeurs-herault.fr\/"}],"regulatoryRequirements":{"conformityDeclaration":""},"fundingAgent":{"fundingAgentType":["Public (France)","Public (France)"],"otherFundingAgentType":["",""]},"sponsor":{"sponsorType":["Priv\u00e9 \u00e0 but non lucratif"],"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":"Recueil actif ou passif:- fichiers informatiques- listing informatiques- fiches papiers- listings papiers","collectionModeOther":""},"dataCollection":{"inclusionStrategyOther":"","samplingModeOther":"","recruitmentSourceOther":"","otherDocumentation":""},"dataCollectionIntegration":{"isDataIntegration":"Non"},"geographicalCoverage":{"geoDetail":"H\u00e9rault"},"dataTypes":{"clinicalDataDetails":"","biologicalDataDetails":"Histologie de la tumeur, grade, marqueurs.","isDataInBiobank":"Non","biobankContent":[],"biobankContentOther":"","dataTypeOther":""},"variableDictionnary":{"variableDictionnaryAvailable":"","variableDictionnaryLink":""},"dataQuality":{"otherDocumentation":""},"mockSample":{"mockSampleAvailable":"","mockSampleLocation":""},"thirdPartySource":{"otherSourceType":[]},"isHealthTheme":"Oui","fileDscr":{"fileTxt":{"fileCitation":{"titlStmt":{"IDno":[]}}}}},"schematype":"survey"}