{"doc_desc":{"title":"Pediatric cancer registry of western France","idno":"FRESH-PEF73258-en","producers":[{"name":"Isabelle PELLIER","affiliation":"CENTRE HOSPITALIER UNIVERSITAIRE D'ANGERS"}]},"study_desc":{"title_statement":{"idno":"FRESH-PEF73258-en","IDno":{"metadata_no":[{"agency":"PEF","code":"73258"},{"agency":"FReSH","code":"FRESH-PEF73258"}]},"title":"Pediatric cancer registry of western France","alternate_title":"ReCaPGO"},"study_authorization":{"agency":[]},"authoring_entity":[{"type":"investigator","name":"Isabelle;PELLIER","PILabo":"CHU Angers","affiliationName":"CENTRE HOSPITALIER UNIVERSITAIRE D'ANGERS","extlink":[{"title":"ORCID","uri":"0000-0002-7988-4712","role":"pi id"},{"title":"IdRef","uri":"176539840","role":"pi id"},{"title":"SIREN","uri":"264900036","role":"organisation id"},{"title":"","uri":"","role":"labo id"}],"email":"IsPellier@chu-angers.fr","isContact":"Yes"}],"oth_id":[{"name":"Consortium of the 7 CHUs and 2 CLCCs of the GOCE Network (Great West Cancers of the Child), interregional organization recognized by the INCa since 2010.","type":"collaboration"}],"production_statement":{"prod_place":"Epidemiology France Portal (PEF)","producers":[{"name":""}],"funding_agencies":[{"name":"AGENCE NATIONALE DE LA RECHERCHE (ANR)","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/00rbzpz17"},{"title":"SIREN","uri":"130002504"}]}]},"distribution_statement":{"contact":[{"name":"Isabelle;PELLIER","email":"IsPellier@chu-angers.fr","type":"contact","affiliationName":"CENTRE HOSPITALIER UNIVERSITAIRE D'ANGERS","contactPointLabo":"","extlink":[{"uri":"https:\/\/ror.org\/0250ngj72","role":"organisation id","title":"ROR"},{"uri":"264900036","role":"organisation id","title":"SIREN"}]}]},"study_info":{"keywords":[{"keyword":"western hemisphere"},{"keyword":"cancer"},{"keyword":"pediatrics"},{"keyword":"specialized registry"},{"keyword":"solid tumors"},{"keyword":"hematological malignancies"}],"topics":[{"topic":"Oncology","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":"Hematology","vocab":"health theme","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/9239f328-78c9-40a5-a0b9-8e66fd9b6245"},{"title":"MeSH","uri":"http:\/\/id.nlm.nih.gov\/mesh\/D006402"}]},{"topic":"Paediatrics","vocab":"health theme","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/bf8aaaac-ddee-41cd-bb8a-c5a63de3fcbd"},{"title":"MeSH","uri":"http:\/\/id.nlm.nih.gov\/mesh\/D010372"}]},{"topic":"Malignant neoplasms of ill-defined or unspecified primary sites","vocab":"cim-11","extLink":[{"uri":"http:\/\/id.who.int\/icd\/entity\/1594217552","title":"CIM-11"}]}],"purpose":"The main objective is to reinforce the existing data collection structure, in order to provide expertise and support (methodological, logistical, quality) to teams in the inter-region. It will (1) provide the inter-regional area with the main information required for comprehensive patient management, from diagnosis through to the long-term period during which the after-effects of initial treatment are likely to be revealed (2) support the emergence of research projects.","abstract":"","coll_dates":[{"start":"2013-01-01"}],"nation":[{"name":"France","abbreviation":"fr","extLink":{"vocab":"ISO","vocabURI":"fr"}}],"geog_coverage":"['Nouvelle-Aquitaine','Bretagne','Centre-Val de Loire','Normandie','Pays de la Loire']","analysis_unit":"Individuals","universe":"{\n    \"level_sex_clusion_I\": [\n        {\n            \"value\": \"Male\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D008297\"\n            }\n        },\n        {\n            \"value\": \"Female\",\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\": \"Infant, Newborn (birth to 28 days)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D007231\"\n            }\n        },\n        {\n            \"value\": \"Infant (28 days to 2 years)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D007223\"\n            }\n        },\n        {\n            \"value\": \"Child, Preschool (2 to 5 years)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D002675\"\n            }\n        },\n        {\n            \"value\": \"Child (6 to 12 years)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D002648\"\n            }\n        },\n        {\n            \"value\": \"Young Adult (19 to 24 years)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D055815\"\n            }\n        }\n    ],\n    \"level_type_clusion_I\": \"Patients population\",\n    \"level_type_clusion_other\": \"\",\n    \"clusion_I\": \"\",\n    \"clusion_E\": \"\"\n}","data_kind":"['Clinical data','Biological data']","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\":\"Other\"}']","sample_frame":{"frame_unit":{"unit_type":"['Through organizations (health services or institutions, schools, businesses, etc.)']"}},"coll_mode":["{\"concept\":{\"vocabURI\":\"Interview\",\"vocab\":\"CESSDA\"},\"value\":\"Interview with the participant (including clinical)\"}"],"research_instrument":"","sources":[],"target_sample_size":"","response_rate":"559"},"method_notes":"Observational Study","study_class":"Unknown","notes":[{"subject":"research type","values":["Observational Study"]},{"subject":"observational study method","values":["Morbidity registry"]}]},"data_access":{"dataset_availability":{"access_place":"","complete":"","status":"{\"value\":\"Restricted access\",\"extLink\":[{\"title\":\"COAR\",\"uri\":\"http:\/\/purl.org\/coar\/access_right\/c_16ec\"}]}"},"dataset_use":{"restrictions":"","conditions":"Each institution in the GOCE network participating in the ReCaPGO database has signed a consortium agreement specifying the terms of use by the institutions making up the GOCE network of the data and results linked to ReCaPGO, as well as the authorisations to exploit and transfer the clinical data. This consortium was signed by all the general managements of the GOCE institutions (CHU Angers, CHU Brest, CHU Caen, CHU Nantes, CHU Poitiers, CHU Rennes, CHU Tours, Institut de canc\u00e9rologie de l'Ouest (ICO) Nantes, Centre Eug\u00e8ne Marquis Rennes) between March 18, 2014 and June 04, 2014 for a renewable 5-year period. In order to participate in the ReCaPGO registry, each applicant must send a written application with supporting arguments to the coordinator of the GOCE Scientific Advisory Board, who will present it to all the medical representatives. Acceptance of a new Center to the Registry will require the unanimous agreement of the Centers already participating in the Registry. This will be formalised in an amendment to the present consortium, signed by all parties.","conf_dec":[{"txt":""}],"spec_perm":[{"txt":"","required":""}],"contact":[{"name":""}],"deposit_req":"","cit_req":""},"notes":""}},"additional":{"IsImport":true,"versionLang":"en","originLang":"en","autoTranslation":false,"status":"imported","creationDate":"----","lastUpdatedAuto":null,"lastUpdatedManual":"03-11-2015","isContributorPI":"No","contributorName":"Isabelle PELLIER","contributorAffiliation":"CENTRE HOSPITALIER UNIVERSITAIRE D'ANGERS","addTeamMember":"","obtainedAuthorization":{"otherAuthorizingAgency":[]},"relatedDocument":[{"type":"","title":"","link":"http:\/\/www.girci-go.org\/OUTILS_INTERREGIONAUX\/documents\/PresentationSPRINGGOCE.pdf"}],"regulatoryRequirements":{"conformityDeclaration":""},"fundingAgent":{"fundingAgentType":["Public (France)"],"otherFundingAgentType":[""]},"sponsor":{"sponsorType":[],"otherSponsorType":[]},"governance":{"committee":"Yes"},"collaborations":{"networkConsortium":"Yes"},"theme":{"complementaryInformation":"","RareDiseases":""},"activeFollowUp":{"isActiveFollowUp":"Yes","followUpModeOther":""},"interventionalStudy":{"researchPurpose":[],"trialPhase":[],"interventionalStudyModel":"","isClinicalTrial":"","otherResearchPurpose":""},"isInclusionGroups":"","allocation":{"allocationMode":"","allocationUnit":""},"masking":{"maskingType":"","blindedMaskingDetails":[]},"arms":[],"intervention":[],"inclusionGroups":[],"collectionProcess":{"collectionModeDetails":"Data entry by Clinical Study Technicians (CSTs)","collectionModeOther":""},"dataCollection":{"inclusionStrategyOther":"","samplingModeOther":"","recruitmentSourceOther":"","otherDocumentation":""},"dataCollectionIntegration":{"isDataIntegration":"No"},"geographicalCoverage":{"geoDetail":"Grand Ouest"},"dataTypes":{"clinicalDataDetails":"","biologicalDataDetails":"","isDataInBiobank":"Yes","biobankContent":[],"biobankContentOther":"","dataTypeOther":""},"variableDictionnary":{"variableDictionnaryAvailable":"","variableDictionnaryLink":""},"dataQuality":{"otherDocumentation":""},"mockSample":{"mockSampleAvailable":"","mockSampleLocation":""},"thirdPartySource":{"otherSourceType":[]},"isHealthTheme":"Yes","fileDscr":{"fileTxt":{"fileCitation":{"titlStmt":{"IDno":[]}}}}},"schematype":"survey"}