{"doc_desc":{"title":"R\u00e9seau National POLA pour la prise en charge des tumeurs oligodendrogliales de haut-grade","idno":"FRESH-PEF9222-fr","producers":[{"name":"Caroline DEHAIS","affiliation":"ASSISTANCE PUBLIQUE HOPITAUX DE PARIS (AP-HP)"}]},"study_desc":{"title_statement":{"idno":"FRESH-PEF9222-fr","IDno":{"metadata_no":[{"agency":"PEF","code":"9222"},{"agency":"FReSH","code":"FRESH-PEF9222"}]},"title":"R\u00e9seau National POLA pour la prise en charge des tumeurs oligodendrogliales de haut-grade","alternate_title":"POLA"},"study_authorization":{"agency":[{"name":"CNIL"},{"name":"CPP"}]},"authoring_entity":[{"type":"investigator","name":"Jean-Yves;DELATTRE","PILabo":"ASSISTANCE PUBLIQUE HOPITAUX DE PARIS (AP-HP) \/ -","affiliationName":"ASSISTANCE PUBLIQUE HOPITAUX DE PARIS (AP-HP)","extlink":[{"title":"","uri":"","role":"pi id"},{"title":"IdRef","uri":"069633444","role":"pi id"},{"title":"SIREN","uri":"267500452","role":"organisation id"},{"title":"","uri":"","role":"labo id"}],"email":"jean-yves.delattre@aphp.fr","isContact":"Oui"}],"oth_id":[{"name":""}],"production_statement":{"prod_place":"Portail Epid\u00e9miologie France (PEF)","producers":[{"name":""}],"funding_agencies":[{"name":""}]},"distribution_statement":{"contact":[{"name":"Jean-Yves;DELATTRE","email":"jean-yves.delattre@aphp.fr","type":"contact","affiliationName":"ASSISTANCE PUBLIQUE HOPITAUX DE PARIS (AP-HP)","contactPointLabo":"","extlink":[{"uri":"https:\/\/ror.org\/00pg5jh14","role":"organisation id","title":"ROR"},{"uri":"267500452","role":"organisation id","title":"SIREN"}]}]},"study_info":{"keywords":[{"keyword":"oligodendrogliomes"},{"keyword":"profil mol\u00e9culaire"},{"keyword":"essai clinique"}],"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":"Neurologie","vocab":"health theme","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/c4793dfe-e80e-49dd-9fcc-a1a742de1b25"},{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/00a5c4f4-b7ee-41a4-bcdf-3a02e6be1660"},{"title":"MeSH","uri":"http:\/\/id.nlm.nih.gov\/mesh\/D009462"}]},{"topic":"Oligodendrogliome anaplasique","vocab":"cim-11","extLink":[{"uri":"http:\/\/id.who.int\/icd\/entity\/955182444","title":"CIM-11"}]},{"topic":"Oligoastrocytome, SAI","vocab":"cim-11","extLink":[{"uri":"http:\/\/id.who.int\/icd\/entity\/2063996909","title":"CIM-11"}]},{"topic":"Glioblastome du cerveau","vocab":"cim-11","extLink":[{"uri":"http:\/\/id.who.int\/icd\/entity\/650534447","title":"CIM-11"}]}],"purpose":"Le r\u00e9seau POLA, destin\u00e9 aux tumeurs oligodendrogliales de haut-grade, a pour objectif de remplir une triple mission: - Harmonisation des techniques du diagnostic de ces tumeurs par l'organisation syst\u00e9matique d'une double analyse histologique des pr\u00e9l\u00e8vements tumoraux et de leur caract\u00e9risation mol\u00e9culaire. Harmonisation de leur prise en charge th\u00e9rapeutique. - D\u00e9veloppement de la recherche sur ces tumeurs rares via la cr\u00e9ation d'une base de donn\u00e9es cliniques \u00e9troitement associ\u00e9e \u00e0 la conservation des \u00e9chantillons tumoraux et son accessibilit\u00e9 aux \u00e9quipes de recherche en neuro-oncologie. - Diffusion de l'information et des connaissances aupr\u00e8s des professionnels de sant\u00e9, des patients et de leur entourage.","abstract":"","coll_dates":[{"start":"2008-01-01"}],"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\": \"Oligodendrogliome anaplasique, oligoastrocytome anaplasique, glioblastome \u00e0 composante oligodendrogliale nouvellement diagnostiqu\u00e9.\",\n    \"clusion_E\": \"\"\n}","data_kind":"['Donn\u00e9es cliniques','Donn\u00e9es paracliniques','Donn\u00e9es biologiques','Donn\u00e9es paracliniques (hors biologiques) : Imagerie']","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\r\nQualit\u00e9 de vie\/sant\u00e9 per\u00e7ue"}]},"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\"}","{\"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":"[500-1000[ individus","response_rate":"Plus de 1000 patients ont pu b\u00e9n\u00e9ficier de l'organisation du r\u00e9seau depuis sa cr\u00e9ation"},"method_notes":"Etude observationnelle","study_class":"Inconnu","notes":[{"subject":"research type","values":["Etude observationnelle"]}]},"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":"10-07-2014","lastUpdatedAuto":null,"lastUpdatedManual":"13-05-2015","isContributorPI":"Non","contributorName":"Caroline DEHAIS","contributorAffiliation":"ASSISTANCE PUBLIQUE HOPITAUX DE PARIS 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du territoire m\u00e9tropolitain ainsi que l'ile de la R\u00e9union sont couverts par 35 centres experts r\u00e9gionaux (coordonn\u00e9s par un m\u00e9decin anatomopathologiste et un m\u00e9decin clinicien) organis\u00e9s autour de 2 centres experts nationaux: anatomopathologique \u00e0 Marseille (dirig\u00e9 par le Pr D. Figarella-Branger, H\u00f4pital de la Timone) et clinique \u00e0 Paris (dirig\u00e9 par le Pr JY Delattre, H\u00f4pital de la Salp\u00eatri\u00e8re)"},"dataTypes":{"clinicalDataDetails":"-","biologicalDataDetails":"profil mol\u00e9culaire tumoral","isDataInBiobank":"Oui","biobankContent":[],"biobankContentOther":"","dataTypeOther":""},"variableDictionnary":{"variableDictionnaryAvailable":"","variableDictionnaryLink":""},"dataQuality":{"otherDocumentation":""},"mockSample":{"mockSampleAvailable":"","mockSampleLocation":""},"thirdPartySource":{"otherSourceType":[]},"isHealthTheme":"Oui","fileDscr":{"fileTxt":{"fileCitation":{"titlStmt":{"IDno":[]}}}}},"schematype":"survey"}