{"doc_desc":{"title":"Youg Onset Dementia","idno":"FRESH-PEF5391-en","producers":[{"name":"Florence PASQUIER","affiliation":"UNIVERSITE DE LILLE"}]},"study_desc":{"title_statement":{"idno":"FRESH-PEF5391-en","IDno":{"metadata_no":[{"agency":"PEF","code":"5391"},{"agency":"FReSH","code":"FRESH-PEF5391"}]},"title":"Youg Onset Dementia","alternate_title":"YOD"},"study_authorization":{"agency":[]},"authoring_entity":[{"type":"investigator","name":"Florence;RICHARD","PILabo":"Universit\u00e9 Lille Nord de France, Lille2 et Institut National de Sant\u00e9 et Recherche \/ UMR INSERM 744","affiliationName":"UNIVERSITE DE LILLE","extlink":[{"title":"ORCID","uri":"0000-0002-0848-0091","role":"pi id"},{"title":"IdRef","uri":"161593771","role":"pi id"},{"title":"SIREN","uri":"130029754","role":"organisation id"},{"title":"RNSR","uri":"200616418Z","role":"labo id"}],"email":"florence.richard@pasteur-lille.fr","isContact":"Yes"},{"type":"investigator","name":"Florence;PASQUIER","PILabo":"Universit\u00e9 Lille Nord de France \/ EA1046","affiliationName":"UNIVERSITE DE LILLE","extlink":[{"title":"ORCID","uri":"0000-0001-9880-9788","role":"pi id"},{"title":"IdRef","uri":"03434991X","role":"pi id"},{"title":"SIREN","uri":"130029754","role":"organisation id"},{"title":"","uri":"","role":"labo id"}],"email":"florence.pasquier@chru-lille.fr","isContact":"Yes"}],"oth_id":[{"name":""}],"production_statement":{"prod_place":"Epidemiology France Portal (PEF)","producers":[{"name":"UNIVERSITE DE LILLE","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/02kzqn938","role":"sponsor id"},{"title":"SIREN","uri":"130029754","role":"sponsor id"}],"role":"sponsor"},{"name":"CENTRE HOSPITALIER UNIVERSITAIRE DE LILLE (CHU)","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/02ppyfa04","role":"sponsor id"},{"title":"SIREN","uri":"265906719","role":"sponsor id"}],"role":"sponsor"}],"funding_agencies":[{"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":"","extlink":[]}]},"distribution_statement":{"contact":[{"name":"Florence;RICHARD","email":"florence.richard@pasteur-lille.fr","type":"contact","affiliationName":"UNIVERSITE DE LILLE","contactPointLabo":"","extlink":[{"uri":"https:\/\/ror.org\/02kzqn938","role":"organisation id","title":"ROR"},{"uri":"130029754","role":"organisation id","title":"SIREN"}]},{"name":"Florence;PASQUIER","email":"florence.pasquier@chru-lille.fr","type":"contact","affiliationName":"UNIVERSITE DE LILLE","contactPointLabo":"","extlink":[{"uri":"https:\/\/ror.org\/02kzqn938","role":"organisation id","title":"ROR"},{"uri":"130029754","role":"organisation id","title":"SIREN"}]}]},"study_info":{"keywords":[{"keyword":"Dementia"},{"keyword":"Alzheimer's disease"},{"keyword":"Frontotemporal dementia"},{"keyword":"Vascular dementia"},{"keyword":"Dementia with Lewy bodies"},{"keyword":"Early Onset"},{"keyword":"Pronostic factors"},{"keyword":"Social impact"},{"keyword":"Medical pathway"},{"keyword":"genetics"}],"topics":[{"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":"Psychiatry","vocab":"health theme","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/3de50dee-da1c-4791-a386-56bca24a5fed"},{"title":"MeSH","uri":"http:\/\/id.nlm.nih.gov\/mesh\/D011570"}]},{"topic":"Socio-demographic and economic determinants","vocab":"health determinant"}],"purpose":"Collect of medical, medicosocial, economic, neuropsychological,biological and imaging information in young patients consulting at CNR-MAJ, with follow-up every 6 months until death. If specific consent has been granted, an autopsy for neuropathological confirmation of the diagnosis will be performed. Primary objective - To determine the diagnostic and medicosocial pathways followed by young patients suffering from early onset dementia Secondary objectives - To evaluate factors associated with diagnostic delay - To constitute clinical, imaging and biological resources for this dementia occuring in young subjects.","abstract":"","coll_dates":[{"start":"2009-01-01"}],"nation":[{"name":"France","abbreviation":"fr","extLink":{"vocab":"ISO","vocabURI":"fr"}}],"geog_coverage":"","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\": \"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    \"level_type_clusion_I\": \"Patients population\",\n    \"level_type_clusion_other\": \"\",\n    \"clusion_I\": \"volunteer patients referred to the CNR-MAJ (Lille-Rouen-Paris Salp\u00eatri\u00e8re) for a dementia syndrome begining before age 60.\",\n    \"clusion_E\": \"\"\n}","data_kind":"['Clinical data','Participant-reported health data','Biological data','Socio-demographic data','Paraclinical data (non-biological) : Imaging']","quality_statement":{"standards":[{"name":"","committee":"","governance":""}],"other_quality_statement":""}},"study_development":{"development_activity":[{"activity_type":"primary evaluation","activity_description":"Health event\/morbidity\r\nHealth event\/mortality\r\nOthers"}]},"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\":\"Transcription\",\"vocab\":\"CESSDA\"},\"value\":\"Converting or copying information into a structured record\"}"],"research_instrument":"Access on specific project only","sources":[],"target_sample_size":"< 500 individuals","response_rate":"338 (dont\/with 220 Alzheimer)"},"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\":\"To be defined\",\"extLink\":[]}"},"dataset_use":{"restrictions":"","conditions":"","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":"09-01-2013","lastUpdatedAuto":null,"lastUpdatedManual":"18-01-2013","isContributorPI":"No","contributorName":"Florence PASQUIER","contributorAffiliation":"UNIVERSITE DE LILLE","addTeamMember":"","obtainedAuthorization":{"otherAuthorizingAgency":[]},"relatedDocument":[],"regulatoryRequirements":{"conformityDeclaration":""},"fundingAgent":{"fundingAgentType":["Public (France)","Private non-profit"],"otherFundingAgentType":["",""]},"sponsor":{"sponsorType":["Public (France)","Public (France)"],"otherSponsorType":["",""]},"governance":{"committee":""},"collaborations":{"networkConsortium":""},"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":"Standardized medical, social, neuropsychological data and family and personal history will be recorded at inclusion and at each follow-up. These data will be collected in a paper based questionnaire and be validated and informatised with a e-crf in each center by a clinical research assistant.","collectionModeOther":""},"dataCollection":{"inclusionStrategyOther":"","samplingModeOther":"","recruitmentSourceOther":"","otherDocumentation":""},"dataCollectionIntegration":{"isDataIntegration":"No"},"geographicalCoverage":{"geoDetail":"Lille, Rouen, Paris Salp\u00eatri\u00e8re"},"dataTypes":{"clinicalDataDetails":"","biologicalDataDetails":"Genetic data for Alzheimer's disease and fontotemporal dementia patients","isDataInBiobank":"Yes","biobankContent":[],"biobankContentOther":"","dataTypeOther":""},"variableDictionnary":{"variableDictionnaryAvailable":"","variableDictionnaryLink":""},"dataQuality":{"otherDocumentation":""},"mockSample":{"mockSampleAvailable":"","mockSampleLocation":""},"thirdPartySource":{"otherSourceType":[]},"isHealthTheme":"Yes","fileDscr":{"fileTxt":{"fileCitation":{"titlStmt":{"IDno":[]}}}}},"schematype":"survey"}