{"doc_desc":{"title":"SANOIA : An online Patient Personal Health Record","idno":"FRESH-PEF5201-en","producers":[{"name":"Laurent CHICHE","affiliation":"HOPITAL EUROPEEN MARSEILLE"}]},"study_desc":{"title_statement":{"idno":"FRESH-PEF5201-en","IDno":{"metadata_no":[{"agency":"PEF","code":"5201"},{"agency":"FReSH","code":"FRESH-PEF5201"}]},"title":"SANOIA : An online Patient Personal Health Record","alternate_title":"SANOIA"},"study_authorization":{"agency":[]},"authoring_entity":[{"type":"investigator","name":"Adam;SELAMNIA","PILabo":"AIMSU - Association pour l'Information M\u00e9dicale en Situations d'Urgences -","affiliationName":"AIMSU - ASSOCIATION POUR L'INFORMATION MEDICALE EN SITUATIONS D'URGENCES","extlink":[{"title":"","uri":"","role":"pi id"},{"title":"","uri":"","role":"pi id"},{"title":"","uri":"","role":"organisation id"},{"title":"","uri":"","role":"labo id"}],"email":"mselamnia@sanoia.com","isContact":"Yes"},{"type":"investigator","name":"Herv\u00e9;SERVY","PILabo":"AIMSU - Association pour l'Information M\u00e9dicale en Situations d'Urgences -","affiliationName":"AIMSU - ASSOCIATION POUR L'INFORMATION MEDICALE EN SITUATIONS D'URGENCES","extlink":[{"title":"ORCID","uri":"0000-0002-8476-4619","role":"pi id"},{"title":"IdRef","uri":"254010407","role":"pi id"},{"title":"","uri":"","role":"organisation id"},{"title":"","uri":"","role":"labo id"}],"email":"hservy@sanoia.com","isContact":"Yes"}],"oth_id":[{"name":""}],"production_statement":{"prod_place":"Epidemiology France Portal (PEF)","producers":[{"name":"E-HEALTH SERVICES SANOIA","extlink":[{"title":"SIREN","uri":"528233190","role":"sponsor id"}],"role":"sponsor"},{"name":"","extlink":[],"role":"sponsor"}],"funding_agencies":[{"name":"AMGEN","extlink":[{"title":"SIREN","uri":"377998679"}]},{"name":"CENTRE NATIONAL DE LA RECHERCHE SCIENTIFIQUE (CNRS)","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/02feahw73"},{"title":"SIREN","uri":"180089013"}]},{"name":"UCB PHARMA (FRANCE)","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/01n6t9x28"},{"title":"SIREN","uri":"562079046"}]}]},"distribution_statement":{"contact":[{"name":"Adam;SELAMNIA","email":"mselamnia@sanoia.com","type":"contact","affiliationName":"AIMSU - ASSOCIATION POUR L'INFORMATION MEDICALE EN SITUATIONS D'URGENCES","contactPointLabo":"","extlink":[]},{"name":"Herv\u00e9;SERVY","email":"hservy@sanoia.com","type":"contact","affiliationName":"AIMSU - ASSOCIATION POUR L'INFORMATION MEDICALE EN SITUATIONS D'URGENCES","contactPointLabo":"","extlink":[]}]},"study_info":{"keywords":[{"keyword":"Rheumatology"},{"keyword":"Patient reported Outcomes (PRO)"},{"keyword":"treatment"},{"keyword":"RAID score"},{"keyword":"RAPID-3 score"},{"keyword":"quality of life"},{"keyword":"Electronic Health Data"}],"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":"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":"Behavioral determinants","vocab":"health determinant"},{"topic":"Healthcare system determinants: Use of care","vocab":"health determinant"},{"topic":"Healthcare system determinants","vocab":"health determinant"}],"purpose":"The French Society of Rheumatology (SFR) and the Patient Association ANDAR have partnered since early 2012 to disseminate a new tool (SANOIA) allowing patients to record and track their personal health data and contribute to their monitoring. This tool drives major expectations in terms of epidemiology. In fact, the information anonymously entered by the patient, about his medical condition and coping of the disease are aggregatable for research. After a phase of evaluation, SANOIA is currently deployed on two medical conditions: Survey 1: Assess the feasibility and the adoption of SANOIA a personal health record freely available for patients with rheumatoid arthritis. In December 2012, 2,902 RA patients were registered. Survey 2: Assess the feasibility and the adoption of SANOIA, a personal health diary freely accessible, which has been adapted for patients with a rare disease thrombocytopenic purpura. \". We look out to extend the tool to other medical conditions.","abstract":"","coll_dates":[{"start":"2010-01-01"}],"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\": \"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\": \"Patients with rheumatoid arthritis, adult fulfilling the ACR criteria for classification (1987, American College of Rheumatology) with Internet access (Survey 1) Patients aged between 18 and 75 years diagnosed with chronic thrombocytopenic purpura according to international guidelines, with permanent access to the Web, and without psychiatric disorder (Survey 2).\",\n    \"clusion_E\": \"\"\n}","data_kind":"['Participant-reported health 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 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":"['Through organizations (health services or institutions, schools, businesses, etc.)']"}},"coll_mode":["{\"concept\":{\"vocabURI\":\"Interview\",\"vocab\":\"CESSDA\"},\"value\":\"Interview with the participant (including clinical)\"}"],"research_instrument":"Access on specific project only","sources":[],"target_sample_size":"[1000-10000[ individuals","response_rate":"n = 56 for RA Patients. Extended to 2,902 patients in December 2012n = 72 for ITP Patients"},"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":"Open to any organization Research, private or public, but subject to instruction for an ethical notice issued by the French Society of Rheumatology.","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":"21-12-2012","lastUpdatedAuto":null,"lastUpdatedManual":"08-02-2013","isContributorPI":"No","contributorName":"Laurent CHICHE","contributorAffiliation":"HOPITAL EUROPEEN MARSEILLE","addTeamMember":"","obtainedAuthorization":{"otherAuthorizingAgency":[]},"relatedDocument":[{"type":"","title":"List of publications in Pubmed","link":"http:\/\/www.ncbi.nlm.nih.gov\/pubmed\/?term=%28Servy+H[author]+OR+Selamnia+A[author]%29+AND+SANOIA"}],"regulatoryRequirements":{"conformityDeclaration":""},"fundingAgent":{"fundingAgentType":["Industry","Public (France)","Industry"],"otherFundingAgentType":["","",""]},"sponsor":{"sponsorType":["Industry","Private non-profit"],"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":"Survey 1: The contents of the SANOIA patient Health Datasheet in the study, completed alone or with assistance according to the group assignment, was compared for three months to the contents of their medical records, held by their rheumatologist-according to the completeness of information on treatment, comorbidities and history. Survey 2: demographic and medical data, as well as the evaluation of the quality of life related to health using the electronic Health Datasheet SANOIA were assessed at baseline and at 1, 3 and 6 months via questionnaire sent by postmail. The use of SANOIA Health Datasheet was evaluated by a specific questionnaire and by measuring the frequency of weblogs of each patient.","collectionModeOther":""},"dataCollection":{"inclusionStrategyOther":"","samplingModeOther":"","recruitmentSourceOther":"","otherDocumentation":""},"dataCollectionIntegration":{"isDataIntegration":"No"},"geographicalCoverage":{"geoDetail":"France"},"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"}