{"doc_desc":{"title":"Gironde register of hematologic malignancies","idno":"FRESH-PEF226-en","producers":[{"name":"Alain MONNEREAU","affiliation":"INSTITUT BERGONIE"}]},"study_desc":{"title_statement":{"idno":"FRESH-PEF226-en","IDno":{"metadata_no":[{"agency":"PEF","code":"226"},{"agency":"FReSH","code":"FRESH-PEF226"}]},"title":"Gironde register of hematologic malignancies","alternate_title":""},"study_authorization":{"agency":[]},"authoring_entity":[{"name":"Alain;MONNEREAU","firstname":"Alain","lastname":"MONNEREAU","type":"investigator","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/02yw1f353","role":"organisation id"},{"title":"SIREN","uri":"781831714","role":"organisation id"}],"email":"monnereau@bergonie.org","affiliationName":"INSTITUT BERGONIE","PILabo":"Institut Bergoni\u00e9, Centre R\u00e9gional de Lutte Contre le Cancer de Bordeaux et du","isContact":true}],"oth_id":[{"name":""}],"production_statement":{"prod_place":"Epidemiology France Portal (PEF)","producers":[{"name":"INSTITUT BERGONIE","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/02yw1f353","role":"sponsor id"},{"title":"SIREN","uri":"781831714","role":"sponsor id"}],"role":"sponsor"}],"funding_agencies":[{"name":"INSTITUT BERGONIE","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/02yw1f353"},{"title":"SIREN","uri":"781831714"}]},{"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":"Alain;MONNEREAU","lastname":"MONNEREAU","firstname":"Alain","type":"contact","email":"monnereau@bergonie.org","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":"Surveillance system"},{"keyword":"hematological malignancies"},{"keyword":"incidence data"},{"keyword":"frequency"},{"keyword":"clusters"},{"keyword":"distribution"},{"keyword":"side effects"}],"topics":[{"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":"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":"Malignant haematopoietic neoplasms without further specification","vocab":"cim-11","extLink":[{"uri":"http:\/\/id.who.int\/icd\/entity\/1510618119","title":"CIM-11"}]}],"purpose":"One of the key objectives of the registry is to improve the health surveillance system for hematological malignancies locally in France: - by analyzing incidence data of different types of hematological malignancies: description of the frequency and distribution of each entity according to time, space and the characteristics of the population, - by producing reliable reference rates for helping the investigation of clusters, - by monitoring the side effects of therapies (e.g.: secondary leukemia), - by actively taking part in improving the surveillance system (expertise in the recording of hematological malignancies; program for improving the recording of cases in France). Clinical or evaluative epidemiology in the general population is also one of the registry's main objectives: - evaluate practices, care pathways and streams, how these change over time and the impact of practice standards on care quality and survival, - estimate the relative survival and prevalence of hematological malignancies for the purposes of comparing with other regions or countries and to estimate the resource needs of diagnosis and treatment (chemotherapy, transplant, radiotherapy) - particularly for the elderly (high proportion of cases), - evaluate the dissemination and impact of clinical research by assessing the applicability of therapeutic trials and impact of therapeutic progress on the quantity\/quality of life of patients, The registry was designed from the outset as a tool for participating in - and even initiating - an epidemiological research program on hematological malignancies in several fields. Descriptive epidemiology, ecological studies or case-control studies, studies on access to health care and prognostic studies in the population, multidisciplinary research with Human and Social Sciences).","abstract":"","coll_dates":[{"start":"2002-01-01","end":"2008-01-01"}],"nation":[{"name":"France","abbreviation":"fr","extLink":{"vocab":"ISO","vocabURI":"fr"}}],"geog_coverage":"['Nouvelle-Aquitaine']","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            \"value\": \"Adult (25 to 44 years)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D000328\"\n            }\n        },\n        {\n            \"value\": \"Middle Aged (45 to 64 years)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D008875\"\n            }\n        },\n        {\n            \"value\": \"Aged (65 to 79 years)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D000368\"\n            }\n        },\n        {\n            \"value\": \"Aged, 80 and over (80 years and more)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D000369\"\n            }\n        }\n    ],\n    \"level_type_clusion_I\": \"Patients population\",\n    \"level_type_clusion_other\": \"\",\n    \"clusion_I\": \"Since January 1st 2002, the registry has included all incident cases of hematological malignancies (leukemia, lymphoma, myeloma, myelodysplastic syndrome, myeloproliferative syndrome) in subjects living on a regular basis in the Gironde at the time of diagnosis.\",\n    \"clusion_E\": \"\"\n}","data_kind":"['Clinical data','Biological data','Socio-demographic data','Paraclinical data (non-biological) : Imaging','Paraclinical data (non-biological) : Other']","quality_statement":{"standards":[{"name":"['International Classification of Diseases applied to oncology (3rd 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(InVS)."}},"additional":{"IsImport":true,"versionLang":"en","originLang":"en","autoTranslation":false,"status":"imported","creationDate":"03-01-2011","lastUpdatedAuto":null,"lastUpdatedManual":"23-01-2015","isContributorPI":false,"contributorName":"","contributorAffiliation":"","addTeamMember":"","obtainedAuthorization":{"otherAuthorizingAgency":[]},"relatedDocument":[{"type":"","title":"","link":"http:\/\/www.ncbi.nlm.nih.gov\/pubmed\/18781390"}],"regulatoryRequirements":{"conformityDeclaration":""},"fundingAgent":{"fundingAgentType":["Private non-profit","Public (France)","Public (France)"],"otherFundingAgentType":["","",""]},"sponsor":{"sponsorType":["Private non-profit"],"otherSponsorType":[""]},"governance":{"committee":""},"collaborations":{"networkConsortium":""},"theme":{"complementaryInformation":"","RareDiseases":""},"activeFollowUp":{"isActiveFollowUp":true,"followUpModeOther":""},"interventionalStudy":{"researchPurpose":[],"trialPhase":[],"interventionalStudyModel":"","isClinicalTrial":"","otherResearchPurpose":""},"isInclusionGroups":"","allocation":{"allocationMode":"","allocationUnit":""},"masking":{"maskingType":"","blindedMaskingDetails":[]},"arms":[],"intervention":[],"inclusionGroups":[],"collectionProcess":{"collectionModeDetails":"Active or passive collection (electronic file)","collectionModeOther":""},"dataCollection":{"inclusionStrategyOther":"","samplingModeOther":"","recruitmentSourceOther":"","otherDocumentation":""},"dataCollectionIntegration":{"isDataIntegration":false},"geographicalCoverage":{"geoDetail":"Gironde"},"dataTypes":{"clinicalDataDetails":"","biologicalDataDetails":"Initial biological examination (Full blood count, Myelogram, Osteomedullary biopsy, Immunophenotyping, Cytogenetic anomalies, Biological examinations for prognostic purposes).","isDataInBiobank":false,"biobankContent":[],"biobankContentOther":"","dataTypeOther":""},"variableDictionnary":{"variableDictionnaryAvailable":"","variableDictionnaryLink":""},"dataQuality":{"otherDocumentation":""},"mockSample":{"mockSampleAvailable":"","mockSampleLocation":""},"thirdPartySource":{"otherSourceType":[]},"isHealthTheme":true,"fileDscr":{"fileTxt":{"fileCitation":{"titlStmt":{"IDno":[]}}}}},"schematype":"survey"}