{"doc_desc":{"title":"Observatoire Auvergne-Loire des Pathologies Inflammatoires Chroniques de l\u2019Appareil Locomoteur \u00e0 d\u00e9but p\u00e9diatrique-cohorte Arthrites Juv\u00e9niles Idiopathiques","idno":"FRESH-PEF5222-fr","producers":[{"name":"Aur\u00e9lie CHAUSSET","affiliation":"CENTRE HOSPITALIER UNIVERSITAIRE DE CLERMONT-FERRAND"}]},"study_desc":{"title_statement":{"idno":"FRESH-PEF5222-fr","IDno":{"metadata_no":[{"agency":"PEF","code":"5222"},{"agency":"FReSH","code":"FRESH-PEF5222"}]},"title":"Observatoire Auvergne-Loire des Pathologies Inflammatoires Chroniques de l\u2019Appareil Locomoteur \u00e0 d\u00e9but p\u00e9diatrique-cohorte Arthrites Juv\u00e9niles Idiopathiques","alternate_title":"APICALE-AJI"},"study_authorization":{"agency":[{"name":"CNIL"}]},"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":"Oui"},{"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":"Oui"}],"oth_id":[{"name":""}],"production_statement":{"prod_place":"Portail Epid\u00e9miologie France (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":"\u00e9volution \u00e0 tr\u00e8s long terme des enfants atteints d\u2019Arthrites Juv\u00e9niles Idiopathiques (AJI)"},{"keyword":"p\u00e9riode de transition"},{"keyword":"maladie articulaire"},{"keyword":"retentissements"}],"topics":[{"topic":"Rhumatologie","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":"Maladies du syst\u00e8me musculosquelettique ou du tissu conjonctif","vocab":"cim-11","extLink":[{"uri":"http:\/\/id.who.int\/icd\/entity\/1473673350","title":"CIM-11"}]},{"topic":"D\u00e9terminants environnementaux : Climat","vocab":"health determinant"},{"topic":"Syst\u00e8mes de soins et acc\u00e8s aux soins","vocab":"health determinant"},{"topic":"D\u00e9terminants environnementaux","vocab":"health determinant"}],"purpose":"L'objectif premier de ce projet est de d\u00e9crire l\u2019\u00e9volution \u00e0 tr\u00e8s long terme des enfants atteints d\u2019Arthrites Juv\u00e9niles Idiopathiques (AJI), depuis l\u2019entr\u00e9e dans la maladie jusqu\u2019\u00e0 l\u2019\u00e2ge adulte, bien au-del\u00e0 de la p\u00e9riode de transition. En particulier, le suivi s\u2019int\u00e9ressera \u00e0 l\u2019activit\u00e9 de la maladie articulaire, mais \u00e9galement \u00e0 ses retentissements \u00e0 tr\u00e8s long terme. - Les objectifs secondaires seront d\u2019apporter des donn\u00e9es relatives aux traitements, \u00e0 leur efficacit\u00e9 et \u00e0 leur tol\u00e9rance, en particulier concernant le devenir des enfants intol\u00e9rants au methotrexate et la surveillance des enfants sous bioth\u00e9rapie. - Enfin, la mise en place de ce suivi permettra d\u2019articuler le soin avec la recherche, en proposant des \u00e9tudes compl\u00e9mentaires dans 3 domaines : o recherche infirmi\u00e8re et en \u00e9ducation th\u00e9rapeutique o \u00e9tude de la micro-architecture osseuse o \u00e9tude de la fonction endoth\u00e9liale et des anomalies vasculaires","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":"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\": \"Petite enfance (2 \u00e0 5 ans)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D002675\"\n            }\n        },\n        {\n            \"value\": \"Enfance (6 \u00e0 12 ans)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D002648\"\n            }\n        },\n        {\n            \"value\": \"Adolescence (13 \u00e0 18 ans)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D000293\"\n            }\n        }\n    ],\n    \"level_type_clusion_I\": \"Patients\",\n    \"level_type_clusion_other\": \"\",\n    \"clusion_I\": \"Enfants atteints d\u2019Arthrites Juv\u00e9niles Idiopathiques (AJI) de la r\u00e9gion Auvergne-Loire\",\n    \"clusion_E\": \"\"\n}","data_kind":"['Donn\u00e9es cliniques','Donn\u00e9es rapport\u00e9es par le participant de l&#x27;\u00e9tude','Donn\u00e9es biologiques']","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\nConsommation de soins\/services de sant\u00e9"}]},"method":{"data_collection":{"time_method":"","frequency":"","sampling_procedure":"['{\"concept\":{\"vocabURI\":\"Other\",\"vocab\":\"CESSDA\"},\"value\":\"Autre\"}']","sample_frame":{"frame_unit":{"unit_type":"['Via des structures (services ou \u00e9tablissements de sant\u00e9, \u00e9coles, entreprises\u2026)']"}},"coll_mode":["{\"concept\":{\"vocabURI\":\"Transcription\",\"vocab\":\"CESSDA\"},\"value\":\"Transcription et saisie d\u2019informations dans un enregistrement structur\u00e9\"}"],"research_instrument":"Acc\u00e8s restreint sur projet sp\u00e9cifique","sources":[],"target_sample_size":"< 500 individus","response_rate":"165 (08\/2014)"},"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":"27-12-2012","lastUpdatedAuto":null,"lastUpdatedManual":"04-02-2021","isContributorPI":"Non","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 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