{"doc_desc":{"title":"Epid\u00e9miologie et sch\u00e9mas de traitement des sarcomes des tissus mous (STS) : analyse r\u00e9trospective des bases de donn\u00e9es des centres experts fran\u00e7ais","idno":"FRESH-PEF73335-fr","producers":[{"name":"Juliette LONGIN","affiliation":"MERCK SANTE"}]},"study_desc":{"title_statement":{"idno":"FRESH-PEF73335-fr","IDno":{"metadata_no":[{"agency":"PEF","code":"73335"},{"agency":"FReSH","code":"FRESH-PEF73335"}]},"title":"Epid\u00e9miologie et sch\u00e9mas de traitement des sarcomes des tissus mous (STS) : analyse r\u00e9trospective des bases de donn\u00e9es des centres experts fran\u00e7ais","alternate_title":""},"study_authorization":{"agency":[{"name":"CNIL"}]},"authoring_entity":[{"name":"Binh Bui;NGUYEN","firstname":"Binh Bui","lastname":"NGUYEN","type":"investigator","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/01hq89f96","role":"organisation id"},{"title":"SIREN","uri":"263305823","role":"organisation id"}],"email":"","affiliationName":"CENTRE HOSPITALIER UNIVERSITAIRE DE BORDEAUX","PILabo":"","isContact":false},{"name":"Jean-Yves;BLAY","firstname":"Jean-Yves","lastname":"BLAY","type":"investigator","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/01cmnjq37","role":"organisation id"},{"title":"SIREN","uri":"779924133","role":"organisation id"}],"email":"jean-yves.blay@lyon.unicancer.fr","affiliationName":"CENTRE LEON BERARD","PILabo":"","isContact":true},{"name":"Jean-Michel;COINDRE","firstname":"Jean-Michel","lastname":"COINDRE","type":"investigator","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/02yw1f353","role":"organisation id"},{"title":"SIREN","uri":"781831714","role":"organisation id"}],"email":"J.Coindre@bordeaux.unicancer.fr","affiliationName":"INSTITUT BERGONIE","PILabo":"","isContact":true},{"name":"Simone;MATHOULIN-PELISSIER","firstname":"Simone","lastname":"MATHOULIN-PELISSIER","type":"investigator","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/02yw1f353","role":"organisation id"},{"title":"SIREN","uri":"781831714","role":"organisation id"}],"email":"simone.pelissier@u-bordeaux.fr","affiliationName":"INSTITUT BERGONIE","PILabo":"","isContact":true},{"name":"Axel;LE CESNE","firstname":"Axel","lastname":"LE CESNE","type":"investigator","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/0321g0743","role":"organisation id"},{"title":"SIREN","uri":"775741101","role":"organisation id"}],"email":"","affiliationName":"INSTITUT GUSTAVE ROUSSY (IGR)","PILabo":"","isContact":false},{"name":"Fran\u00e7oise;DUCIMETIERE","firstname":"Fran\u00e7oise","lastname":"DUCIMETIERE","type":"investigator","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/02vjkv261","role":"organisation id"},{"title":"SIREN","uri":"180036048","role":"organisation id"}],"email":"","affiliationName":"INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE (INSERM)","PILabo":"","isContact":false}],"oth_id":[{"name":"Partenariat public-priv\u00e9 : French Sarcoma Group (GFS) - MERCK","type":"collaboration"}],"production_statement":{"prod_place":"Portail Epid\u00e9miologie France (PEF)","producers":[{"name":"GROUPE SARCOME FRANCAIS - GROUPE D'ETUDE DES TUMEURS OSSEUSES (GSF-GETO)","extlink":[{"title":"SIREN","uri":"750388860","role":"sponsor id"}],"role":"sponsor"}],"funding_agencies":[{"name":"MERCK SANTE","extlink":[{"title":"SIREN","uri":"572028033"}]}]},"distribution_statement":{"contact":[{"name":"Jean-Yves;BLAY","lastname":"BLAY","firstname":"Jean-Yves","type":"contact","email":"jean-yves.blay@lyon.unicancer.fr","affiliationName":"CENTRE LEON BERARD","contactPointLabo":"","extlink":[{"uri":"https:\/\/ror.org\/01cmnjq37","role":"organisation id","title":"ROR"},{"uri":"779924133","role":"organisation id","title":"SIREN"}]},{"name":"Jean-Michel;COINDRE","lastname":"COINDRE","firstname":"Jean-Michel","type":"contact","email":"J.Coindre@bordeaux.unicancer.fr","affiliationName":"INSTITUT BERGONIE","contactPointLabo":"","extlink":[{"uri":"https:\/\/ror.org\/02yw1f353","role":"organisation id","title":"ROR"},{"uri":"781831714","role":"organisation id","title":"SIREN"}]},{"name":"Simone;MATHOULIN-PELISSIER","lastname":"MATHOULIN-PELISSIER","firstname":"Simone","type":"contact","email":"simone.pelissier@u-bordeaux.fr","affiliationName":"INSTITUT BERGONIE","contactPointLabo":"","extlink":[{"uri":"https:\/\/ror.org\/02yw1f353","role":"organisation id","title":"ROR"},{"uri":"781831714","role":"organisation id","title":"SIREN"}]}]},"study_info":{"keywords":[{"keyword":"Sarcome"}],"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"}]},{"topic":"Syst\u00e8mes de soins et acc\u00e8s aux soins","vocab":"health determinant"}],"purpose":"D\u00e9crire les sch\u00e9mas de traitement des patients atteints de sarcomes (y compris les sarcomes des visc\u00e8res) \u00e0 un stade avanc\u00e9 (non r\u00e9s\u00e9cable, localement avanc\u00e9 ou m\u00e9tastatique) en France. Objectifs secondaires : - D\u00e9crire les caract\u00e9ristiques des patients atteints de sarcomes (y compris le sarcome visc\u00e9ral) (donn\u00e9es sociod\u00e9mographiques, type de sarcome, sous-type histologique, localisation de la tumeur, stade de la maladie, etc.) - Evaluer l'incidence des sarcomes (y compris les sarcomes des visc\u00e8res) en France. - D\u00e9crire le diagnostic de sarcomes (double examen anatomopathologique) et les ant\u00e9c\u00e9dents th\u00e9rapeutiques. - D\u00e9crire la dur\u00e9e des diff\u00e9rents traitements de la maladie","abstract":"","coll_dates":[{"start":"2012-01-01","end":"2013-01-01"}],"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\": \"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\": \"Patients avec un diagnostic de sarcome, \u00e2g\u00e9s de plus de 18 ans, enregistr\u00e9s dans les bases de donn\u00e9es Conticabase\\\/NetSarc\\\/RRePS entre le 1er janvier 2012 et le 31 d\u00e9cembre 2013 par un centre expert fran\u00e7ais participant \u00e0 l'\u00e9tude entre le 1er janvier 2012 et le 31 d\u00e9cembre 2013.\",\n    \"clusion_E\": \"\"\n}","data_kind":"['Donn\u00e9es cliniques']","quality_statement":{"standards":[{"name":"","committee":"","governance":""}],"other_quality_statement":""}},"study_development":{"development_activity":[]},"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)']"}},"coll_mode":["{\"concept\":{\"vocabURI\":\"SelfAdministeredQuestionnaire\",\"vocab\":\"CESSDA\"},\"value\":\"Questionnaire auto-administr\u00e9\"}"],"research_instrument":"Acc\u00e8s restreint sur projet sp\u00e9cifique","sources":[],"target_sample_size":"[1000-10000[ individus","response_rate":"Conticabase: N = 1099 \/ NetSarc: N= 4551 \/ RRePS: N=6812"},"method_notes":"Etude observationnelle","study_class":"Inconnu","notes":[{"subject":"research type","values":["Etude observationnelle"]}]},"data_access":{"dataset_availability":{"access_place":"","complete":"","status":"{\"value\":\"A d\u00e9finir\",\"extLink\":[]}"},"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":"21-06-2016","lastUpdatedAuto":null,"lastUpdatedManual":"07-07-2025","isContributorPI":false,"contributorName":"","contributorAffiliation":"","addTeamMember":"","obtainedAuthorization":{"otherAuthorizingAgency":[""]},"relatedDocument":[],"regulatoryRequirements":{"conformityDeclaration":""},"fundingAgent":{"fundingAgentType":["Industrie"],"otherFundingAgentType":[""]},"sponsor":{"sponsorType":["Priv\u00e9 \u00e0 but non lucratif"],"otherSponsorType":[""]},"governance":{"committee":true},"collaborations":{"networkConsortium":true},"theme":{"complementaryInformation":"","RareDiseases":""},"activeFollowUp":{"isActiveFollowUp":false,"followUpModeOther":""},"interventionalStudy":{"researchPurpose":[],"trialPhase":[],"interventionalStudyModel":"","isClinicalTrial":"","otherResearchPurpose":""},"isInclusionGroups":"","allocation":{"allocationMode":"","allocationUnit":""},"masking":{"maskingType":"","blindedMaskingDetails":[]},"arms":[],"intervention":[],"inclusionGroups":[],"collectionProcess":{"collectionModeDetails":"Extraction, traitement et analyse des bases de donn\u00e9es RRePS, NetSarc et Conticabase par le Groupe Fran\u00e7ais des Sarcomes (GFS)","collectionModeOther":""},"dataCollection":{"inclusionStrategyOther":"","samplingModeOther":"","recruitmentSourceOther":"","otherDocumentation":""},"dataCollectionIntegration":{"isDataIntegration":false},"geographicalCoverage":{"geoDetail":"France"},"dataTypes":{"clinicalDataDetails":"Caract\u00e9ristiques sociod\u00e9mographiques des patients ; \u00e9pid\u00e9miologie des sarcomes (type de sarcome) ; \u00e9pid\u00e9miologie des sarcomes (sous-type histologique, localisation de la tumeur, profondeur de la tumeur, grade, stade au moment du diagnostic, stade) ; diagnostic (double examen anatomopathologique par un centre expert, diagnostic initial, diagnostic de confirmation ; sarcome localement avanc\u00e9 ou m\u00e9tastatique non r\u00e9s\u00e9cable (1\u00e8re ligne de traitement syst\u00e9mique, 1\u00e8re ligne de chimioth\u00e9rapie et type de m\u00e9dicament, date de diagnostic du stade localement avanc\u00e9\/m\u00e9tastatique non r\u00e9s\u00e9cable, date d'initiation de la 1\u00e8re ligne de chimioth\u00e9rapie, date de progression apr\u00e8s la 1\u00e8re ligne de traitement, 2\u00e8me, 3\u00e8me et 4\u00e8me ligne de chimioth\u00e9rapie et type de m\u00e9dicament).","biologicalDataDetails":"","isDataInBiobank":false,"biobankContent":[],"biobankContentOther":"","dataTypeOther":""},"variableDictionnary":{"variableDictionnaryAvailable":"","variableDictionnaryLink":""},"dataQuality":{"otherDocumentation":""},"mockSample":{"mockSampleAvailable":"","mockSampleLocation":""},"thirdPartySource":{"otherSourceType":[]},"isHealthTheme":true,"fileDscr":{"fileTxt":{"fileCitation":{"titlStmt":{"IDno":[]}}}}},"schematype":"survey"}