{"doc_desc":{"title":"Registre des tumeurs du Doubs","idno":"FRESH-PEF210-fr","producers":[{"name":"ANNE-SOPHIE WORONOFF","affiliation":"CHU BESANCON (CHU)"}]},"study_desc":{"title_statement":{"idno":"FRESH-PEF210-fr","IDno":{"metadata_no":[{"agency":"PEF","code":"210"},{"agency":"FReSH","code":"FRESH-PEF210"}]},"title":"Registre des tumeurs du Doubs","alternate_title":""},"study_authorization":{"agency":[{"name":"CNIL"}]},"authoring_entity":[{"type":"investigator","name":"Anne-Sophie;WORONOFF","PILabo":"","affiliationName":"CHU BESANCON (CHU)","extlink":[{"title":"","uri":"","role":"pi id"},{"title":"IdRef","uri":"169445925","role":"pi id"},{"title":"SIREN","uri":"262501760","role":"organisation id"},{"title":"","uri":"","role":"labo id"}],"email":"","isContact":"Non"}],"oth_id":[{"name":"Membre du r\u00e9seau fran\u00e7ais des registres de cancers (FRANCIM)","type":"collaboration"}],"production_statement":{"prod_place":"Portail Epid\u00e9miologie France (PEF)","producers":[{"name":"CHU BESANCON (CHU)","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/0084te143","role":"sponsor id"},{"title":"SIREN","uri":"804366995","role":"sponsor id"}],"role":"sponsor"}],"funding_agencies":[{"name":"CHU BESANCON (CHU)","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/0084te143"},{"title":"SIREN","uri":"262501760"}]},{"name":"INSTITUT NATIONAL DU CANCER (INCA)","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/03m8vkq32"},{"title":"SIREN","uri":"187512777"}]},{"name":"MINISTERE DU TRAVAIL, DE LA SANTE, DES SOLIDARITES ET DES FAMILLES","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/01wp0c315"},{"title":"SIREN","uri":"130016546"}]},{"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":"Cancers"},{"keyword":"tumeurs solides"},{"keyword":"h\u00e9mopathies malignes"}],"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":"Tumeurs","vocab":"cim-11","extLink":[{"uri":"http:\/\/id.who.int\/icd\/entity\/1630407678","title":"CIM-11"}]}],"purpose":"Le registre r\u00e9alise un recueil continu et exhaustif de tous les nouveaux diagnostics de cancer dans la population g\u00e9n\u00e9rale r\u00e9sidant dans le d\u00e9partement du Doubs, quel que soit le lieu de la prise en charge. Il a le double objectif de d\u00e9crire et surveiller le risque de cancer et de conduire des recherches \u00e0 partir de l'analyse des donn\u00e9es recueillies ou d'enqu\u00eates ponctuelles. Objectifs du Registre en termes de sant\u00e9 publique: - Participer \u00e0 la surveillance \u00e9pid\u00e9miologique des cancers au niveau local, national et international, par la publication d\u2019indicateurs d\u2019incidence, de pr\u00e9valence et de survie par localisation de cancer, par sexe, par \u00e2ge et par ann\u00e9e de diagnostic. - Contribuer \u00e0 l\u2019\u00e9valuation des actions de pr\u00e9vention primaire et secondaire (d\u00e9pistage organis\u00e9 des cancers), des prises en charge des patients et des besoins de soins en population g\u00e9n\u00e9rale.","abstract":"","coll_dates":[{"start":"1978-01-01","end":"2024-01-01"}],"nation":[{"name":"France","abbreviation":"fr","extLink":{"vocab":"ISO","vocabURI":"fr"}}],"geog_coverage":"['Bourgogne Franche-Comt\u00e9']","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 primitives diagnostiqu\u00e9es chez des patients r\u00e9sidant au moment du diagnostic dans le Doubs, quel que soit leur lieu de prise en charge, sont enregistr\u00e9es. Sont \u00e9galement enregistr\u00e9es les tumeurs primitives in situ du sein, du c\u00f4lon-rectum, du col de l\u2019ut\u00e9rus, de la vessie et des voies excr\u00e9trices, les m\u00e9lanomes in situ. Les tumeurs b\u00e9nignes et de malignit\u00e9 interm\u00e9diaire du syst\u00e8me nerveux central et de la vessie sont \u00e9galement enregistr\u00e9es ainsi que les tumeurs borderline de l\u2019ovaire.\",\n    \"clusion_E\": \"\"\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":"['CIM-O ; CIM ; TNM (AJCC)']","committee":"","governance":""}],"other_quality_statement":"['Les donn\u00e9es brutes sont cod\u00e9es selon les normes internationales. La base de donn\u00e9es est v\u00e9rifi\u00e9e par l\\'outil europ\u00e9en (JRC tools), elle fait \u00e9galement l\\'objet de v\u00e9rification de cas tir\u00e9s au sort']"}},"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":"['Via des structures (services ou \u00e9tablissements de sant\u00e9, \u00e9coles, entreprises\u2026) Base m\u00e9dico-administrative (de patients, Assurance Maladie\/Mutuelle) Registre de maladies, de d\u00e9c\u00e8s']"}},"coll_mode":["{\"concept\":{\"vocabURI\":\"Transcription\",\"vocab\":\"CESSDA\"},\"value\":\"Transcription et saisie d\u2019informations dans un enregistrement structur\u00e9\"}"],"research_instrument":"Acc\u00e8s libre","sources":[{"sourceCitation":{"titlStmt":{"titl":""},"holdings":"","notes":{"subject":"source purpose","value":""}},"srcOrig":["Base m\u00e9dico-administrative"]}],"target_sample_size":">= 20000 individus","response_rate":"125000 patients"},"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":"Les donn\u00e9es enregistr\u00e9es dans la base du Registre peuvent faire l'objet d'\u00e9tudes sp\u00e9cifiques. Les demandes de projets sont analys\u00e9es par le Conseil Scientifique et Strat\u00e9gique du Registre. Les modalit\u00e9s de collaborations doivent \u00eatre d\u00e9finies.","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":"21-12-2010","lastUpdatedAuto":null,"lastUpdatedManual":"02-06-2025","isContributorPI":"Non","contributorName":"ANNE-SOPHIE WORONOFF","contributorAffiliation":"CHU BESANCON (CHU)","addTeamMember":"","obtainedAuthorization":{"otherAuthorizingAgency":[""]},"relatedDocument":[],"regulatoryRequirements":{"conformityDeclaration":""},"fundingAgent":{"fundingAgentType":["Public (France)","Public (France)","Public (France)","Public (France)"],"otherFundingAgentType":["","","",""]},"sponsor":{"sponsorType":["Public (France)"],"otherSponsorType":[""]},"governance":{"committee":"Oui"},"collaborations":{"networkConsortium":"Oui"},"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 - R\u00e9ception des comptes rendus anatomopathologiques, cytoh\u00e9matologiques, des listes des s\u00e9jours (PMSI), des mises en ALD, des passages en RCP. Listes par envoi informatique crypt\u00e9 .- Recherche active d\u2019informations compl\u00e9mentaires r\u00e9guli\u00e8res dans les dossiers m\u00e9dicaux","collectionModeOther":""},"dataCollection":{"inclusionStrategyOther":"","samplingModeOther":"","recruitmentSourceOther":"","otherDocumentation":""},"dataCollectionIntegration":{"isDataIntegration":"Oui"},"geographicalCoverage":{"geoDetail":"D\u00e9partement du Doubs (25)"},"dataTypes":{"clinicalDataDetails":"Date de diagnostic, localisation du cancer, stade au diagnostic, traitement","biologicalDataDetails":"Tout examen compl\u00e9mentaire apportant des informations pour le codage de la tumeur","isDataInBiobank":"Non","biobankContent":[],"biobankContentOther":"","dataTypeOther":""},"variableDictionnary":{"variableDictionnaryAvailable":"","variableDictionnaryLink":""},"dataQuality":{"otherDocumentation":""},"mockSample":{"mockSampleAvailable":"","mockSampleLocation":""},"thirdPartySource":{"otherSourceType":[""]},"isHealthTheme":"Oui","fileDscr":{"fileTxt":{"fileCitation":{"titlStmt":{"IDno":[]}}}}},"schematype":"survey"}