{"doc_desc":{"title":"Auvergne-Loire observatory on chronic inflammatory diseases of the musculoskeletal system occurring in childhood - Arthrites Juv\u00e9niles Idiopathiques cohort (long-term follow-up of children with juvenile idiopathic arthritis)","idno":"FRESH-PEF5222-en","producers":[{"name":"Aur\u00e9lie CHAUSSET","affiliation":"CENTRE HOSPITALIER UNIVERSITAIRE DE CLERMONT-FERRAND"}]},"study_desc":{"title_statement":{"idno":"FRESH-PEF5222-en","IDno":{"metadata_no":[{"agency":"PEF","code":"5222"},{"agency":"FReSH","code":"FRESH-PEF5222"}]},"title":"Auvergne-Loire observatory on chronic inflammatory diseases of the musculoskeletal system occurring in childhood - Arthrites Juv\u00e9niles Idiopathiques cohort (long-term follow-up of children with juvenile idiopathic arthritis)","alternate_title":"APICALE-AJI"},"study_authorization":{"agency":[]},"authoring_entity":[{"type":"investigator","name":"Aur\u00e9lie;CHAUSSET","PILabo":"CHU Clermont-Ferrand \/ INSERM - Institut National de Sant\u00e9 et Recherche \/ Centre de Recherche Clinique chez l\u2019Enfant - Inserm CIC 1405, CHU ESTAING","affiliationName":"CENTRE HOSPITALIER UNIVERSITAIRE DE CLERMONT-FERRAND","extlink":[{"title":"ORCID","uri":"0000-0001-5266-2389","role":"pi id"},{"title":"IdRef","uri":"282953876","role":"pi id"},{"title":"SIREN","uri":"266307461","role":"organisation id"},{"title":"","uri":"","role":"labo id"}],"email":"achausset@chu-clermontferrand.fr","isContact":"Yes"},{"type":"investigator","name":"Etienne;MERLIN","PILabo":"CHU Clermont-Ferrand \/ INSERM - Institut National de Sant\u00e9 et Recherche \/ Inserm CIC 1405","affiliationName":"CENTRE HOSPITALIER UNIVERSITAIRE DE CLERMONT-FERRAND","extlink":[{"title":"ORCID","uri":"0000-0001-6527-7893","role":"pi id"},{"title":"IdRef","uri":"109223241","role":"pi id"},{"title":"SIREN","uri":"266307461","role":"organisation id"},{"title":"","uri":"","role":"labo id"}],"email":"e_merlin@chu-clermontferrand.fr","isContact":"Yes"}],"oth_id":[{"name":""}],"production_statement":{"prod_place":"Epidemiology France Portal (PEF)","producers":[{"name":"INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE (INSERM)","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/02vjkv261","role":"sponsor id"},{"title":"SIREN","uri":"180036048","role":"sponsor id"}],"role":"sponsor"},{"name":"CENTRE HOSPITALIER UNIVERSITAIRE DE CLERMONT-FERRAND","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/02tcf7a68","role":"sponsor id"},{"title":"SIREN","uri":"266307462","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"}]}]},"distribution_statement":{"contact":[{"name":"Aur\u00e9lie;CHAUSSET","email":"achausset@chu-clermontferrand.fr","type":"contact","affiliationName":"CENTRE HOSPITALIER UNIVERSITAIRE DE CLERMONT-FERRAND","contactPointLabo":"","extlink":[{"uri":"https:\/\/ror.org\/02tcf7a68","role":"organisation id","title":"ROR"},{"uri":"266307461","role":"organisation id","title":"SIREN"}]},{"name":"Etienne;MERLIN","email":"e_merlin@chu-clermontferrand.fr","type":"contact","affiliationName":"CENTRE HOSPITALIER UNIVERSITAIRE DE CLERMONT-FERRAND","contactPointLabo":"","extlink":[{"uri":"https:\/\/ror.org\/02tcf7a68","role":"organisation id","title":"ROR"},{"uri":"266307461","role":"organisation id","title":"SIREN"}]}]},"study_info":{"keywords":[{"keyword":"Very long-term progression of children with Juvenile Idiopathic Arthritis (AJI)"},{"keyword":"transition period"},{"keyword":"joint disease"},{"keyword":"repercussions"}],"topics":[{"topic":"Rheumatology","vocab":"health theme","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/bfb0bafd-7894-45ba-84fc-ddab5fd6c537"},{"title":"MeSH","uri":"http:\/\/id.nlm.nih.gov\/mesh\/D012219"}]},{"topic":"Diseases of the musculoskeletal system or connective tissue","vocab":"cim-11","extLink":[{"uri":"http:\/\/id.who.int\/icd\/entity\/1473673350","title":"CIM-11"}]},{"topic":"Environmental determinants: Climate","vocab":"health determinant"},{"topic":"Environmental determinants","vocab":"health determinant"}],"purpose":"The primary objective of this project is to describe the very long-term progression of Juvenile Idiopathic Arthritis (AJI) in children, from onset of the disease until adulthood that extends past the transition period. The follow-up will particular focus on joint disease activity as well as very long-term repercussions.- The secondary objectives will be to provide data relating to treatment effectiveness and tolerance, especially concerning the outcome for children intolerant to methotrexate and the monitoring children in biotherapy. - This follow-up will also aid articulation between research and practice by proposing further studies in 3 areas: o nursing research and therapeutic education o study of bone microarchitecture o study of endothelial function and vascular abnormalities","abstract":"","coll_dates":[{"start":"2011-01-01"}],"nation":[{"name":"France","abbreviation":"fr","extLink":{"vocab":"ISO","vocabURI":"fr"}}],"geog_coverage":"['Auvergne Rh\u00f4ne-Alpes']","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\": \"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    \"level_type_clusion_I\": \"Patients population\",\n    \"level_type_clusion_other\": \"\",\n    \"clusion_I\": \"Children with Juvenile Idiopathic Arthritis (AJI) from the Auvergne-Loire region\",\n    \"clusion_E\": \"\"\n}","data_kind":"['Clinical data','Participant-reported health data','Biological data']","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\nHealth care consumption and services"}]},"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":"165 (08\/2014)"},"method_notes":"Observational Study","study_class":"Unknown","notes":[{"subject":"research type","values":["Observational Study"]}]},"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":"","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":"27-12-2012","lastUpdatedAuto":null,"lastUpdatedManual":"04-02-2021","isContributorPI":"No","contributorName":"Aur\u00e9lie CHAUSSET","contributorAffiliation":"CENTRE HOSPITALIER UNIVERSITAIRE DE CLERMONT-FERRAND","addTeamMember":"","obtainedAuthorization":{"otherAuthorizingAgency":[]},"relatedDocument":[{"type":"","title":"","link":"http:\/\/www.ncbi.nlm.nih.gov\/pubmed\/21544583"}],"regulatoryRequirements":{"conformityDeclaration":""},"fundingAgent":{"fundingAgentType":["Public (France)"],"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":"Follow-up log. Patient data will be sent by post to the coordinating centre (CHU de Clermont-Ferrand). Data input will be carried our annually Access designed for this purpose","collectionModeOther":""},"dataCollection":{"inclusionStrategyOther":"","samplingModeOther":"","recruitmentSourceOther":"","otherDocumentation":""},"dataCollectionIntegration":{"isDataIntegration":"No"},"geographicalCoverage":{"geoDetail":"Auvergne-Loire"},"dataTypes":{"clinicalDataDetails":"","biologicalDataDetails":"","isDataInBiobank":"No","biobankContent":[],"biobankContentOther":"","dataTypeOther":""},"variableDictionnary":{"variableDictionnaryAvailable":"","variableDictionnaryLink":""},"dataQuality":{"otherDocumentation":""},"mockSample":{"mockSampleAvailable":"","mockSampleLocation":""},"thirdPartySource":{"otherSourceType":[]},"isHealthTheme":"Yes","fileDscr":{"fileTxt":{"fileCitation":{"titlStmt":{"IDno":[]}}}}},"schematype":"survey"}