{"doc_desc":{"title":"Register of Childhood Disabilities and Perinatal Data - Is\u00e8re et deux Savoie counties","idno":"FRESH-PEF168-en","producers":[{"name":"Christine CANS","affiliation":"CENTRE HOSPITALIER UNIVERSITAIRE DE GRENOBLE"}]},"study_desc":{"title_statement":{"idno":"FRESH-PEF168-en","IDno":{"metadata_no":[{"agency":"PEF","code":"168"},{"agency":"FReSH","code":"FRESH-PEF168"}]},"title":"Register of Childhood Disabilities and Perinatal Data - Is\u00e8re et deux Savoie counties","alternate_title":"RHEOP"},"study_authorization":{"agency":[]},"authoring_entity":[{"type":"investigator","name":"Christine;CANS","PILabo":"CHU de \/ Service d'information et informatique m\u00e9dical","affiliationName":"CENTRE HOSPITALIER UNIVERSITAIRE DE GRENOBLE","extlink":[{"title":"","uri":"","role":"pi id"},{"title":"IdRef","uri":"100952798","role":"pi id"},{"title":"SIREN","uri":"263800302","role":"organisation id"},{"title":"","uri":"","role":"labo id"}],"email":"","isContact":"No"}],"oth_id":[{"name":""}],"production_statement":{"prod_place":"Epidemiology France Portal (PEF)","producers":[{"name":"DEPARTEMENT DE L ISERE","extlink":[{"title":"SIREN","uri":"223800012","role":"sponsor id"}],"role":"sponsor"},{"name":"DEPARTEMENT DE LA SAVOIE","extlink":[{"title":"SIREN","uri":"227300019","role":"sponsor id"}],"role":"sponsor"},{"name":"DEPARTEMENT DE LA HAUTE SAVOIE","extlink":[{"title":"SIREN","uri":"227400017","role":"sponsor id"}],"role":"sponsor"},{"name":"UNIVERSITE GRENOBLE ALPES","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/02rx3b187","role":"sponsor id"},{"title":"SIREN","uri":"130026081","role":"sponsor id"}],"role":"sponsor"}],"funding_agencies":[{"name":"DEPARTEMENT DE L ISERE","extlink":[{"title":"SIREN","uri":"223800012"}]},{"name":"DEPARTEMENT DE LA HAUTE SAVOIE","extlink":[{"title":"SIREN","uri":"227400017"}]},{"name":"DEPARTEMENT DE LA SAVOIE","extlink":[{"title":"SIREN","uri":"227300019"}]},{"name":"INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE (INSERM)","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/02vjkv261"},{"title":"SIREN","uri":"180036048"}]},{"name":"SANTE PUBLIQUE FRANCE","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/00dfw9p58"},{"title":"SIREN","uri":"130022338"}]}]},"distribution_statement":{"contact":[{"name":"","type":"contact"}]},"study_info":{"keywords":[{"keyword":"Stillbirth and Induced therapeutic abortions Severe deficiencies of the child"}],"topics":[{"topic":"Gynaecology and obstetrics","vocab":"health theme","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/7de64596-5b0d-4977-8f98-b982ff2ec17d"},{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/284ca20c-beb4-4abe-99fa-ef4513358bad"},{"title":"MeSH","uri":"http:\/\/id.nlm.nih.gov\/mesh\/D006176"},{"title":"MeSH","uri":"http:\/\/id.nlm.nih.gov\/mesh\/D009774"}]},{"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"}]}],"purpose":"In the area of public health: (1) monitor the change in the prevalence of severe deficiencies in children on a geographical basis (three counties starting in 2005) (2) monitor the change in the rate of stillbirths and more particularly of the prevalence of induced abortions for medical reasons over the same geographical base (3) describe the educative and medical care (4) assist in the planning of needs, in order to ensure optimal care for these children In the area of research: (1) encourage analytical surveys that are specific to each type of deficiency, or that cover the associated deficiencies (2) identify the etiologies of the deficiencies and serious perinatal events (3) Collect information on the perinatal events that may be in relation with the occurence of deficiencies","abstract":"","coll_dates":[{"start":"1991-01-01"}],"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\": \"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 (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\": \"Deficiency pool: All children under the age of 7 years having at least one main severe deficiency and residing in one of the d\u00e9partements of Is\u00e8re, Savoie or Haute-Savoie.  Perinatal pool: serious perinatal events such as cases of stillbirth and abortion occurring each year for the women domiciled in one of these three d\u00e9partements.\",\n    \"clusion_E\": \"\"\n}","data_kind":"['Clinical data','Socio-demographic 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\r\nQuality of life\/health perception"}]},"method":{"data_collection":{"time_method":"","frequency":"","sampling_procedure":"['{\"concept\":{\"vocabURI\":\"Other\",\"vocab\":\"CESSDA\"},\"value\":\"Other\"}']","sample_frame":{"frame_unit":{"unit_type":""}},"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":"[1000-10000[ individuals","response_rate":"2717 : several deficiency 2414 : stillbirths 2317 : medical termination of pregnancy"},"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":"","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":"15-12-2010","lastUpdatedAuto":null,"lastUpdatedManual":"02-04-2012","isContributorPI":"No","contributorName":"","contributorAffiliation":"","addTeamMember":"","obtainedAuthorization":{"otherAuthorizingAgency":[]},"relatedDocument":[{"type":"","title":"Liste des publications dans Pubmed","link":"http:\/\/tinyurl.com\/PUBMED-RHEOP"}],"regulatoryRequirements":{"conformityDeclaration":""},"fundingAgent":{"fundingAgentType":["Public (France)","Public (France)","Public (France)","Public (France)","Public (France)"],"otherFundingAgentType":["","","","",""]},"sponsor":{"sponsorType":["Public (France)","Public (France)","Public (France)","Public (France)"],"otherSponsorType":["","","",""]},"governance":{"committee":""},"collaborations":{"networkConsortium":""},"theme":{"complementaryInformation":"","RareDiseases":""},"activeFollowUp":{"isActiveFollowUp":"No","followUpModeOther":""},"interventionalStudy":{"researchPurpose":[],"trialPhase":[],"interventionalStudyModel":"","isClinicalTrial":"","otherResearchPurpose":""},"isInclusionGroups":"","allocation":{"allocationMode":"","allocationUnit":""},"masking":{"maskingType":"","blindedMaskingDetails":[]},"arms":[],"intervention":[],"inclusionGroups":[],"collectionProcess":{"collectionModeDetails":"A systematic collection of information intended to identify the cases is conducted with: (1) the D\u00e9partementale Bureau for Autonomy (MDA) and the d\u00e9partementale bureaus for people with disabilities (MDPH) of the d\u00e9partements involved (2) clinical departments of neonatology, pediatrics, maternity wards and specialized departments using medical dossiers (3) medical information departments (4) early-action medical centers (5) child psychiatry sectors (6) PMIs and networks of liberal pediatricians (7) cytogenetics departments (8) Multi-disciplinary centers for prenatal diagnostics (CPDNP) (9) anatomopathology laboratories","collectionModeOther":""},"dataCollection":{"inclusionStrategyOther":"","samplingModeOther":"","recruitmentSourceOther":"","otherDocumentation":""},"dataCollectionIntegration":{"isDataIntegration":"No"},"geographicalCoverage":{"geoDetail":"Is\u00e8re, Savoie, Haute Savoie"},"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"}