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SANOIA : An online Patient Personal Health Record

France, 2010 - 3000
Reference ID
FRESH-PEF5201-en
Producer(s)
Adam;SELAMNIA, Hervé;SERVY
Metadata
DDI/XML JSON
Study website Interactive tools
Created on
Mar 11, 2026
Last modified
Mar 11, 2026
Page views
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  • Identification
  • Scope
  • Coverage
  • Producers and sponsors
  • Sampling
  • Survey instrument
  • Data collection
  • Study activities
  • Data Access
  • Contacts
  • Metadata production

    • Identification

    Survey ID number

    FRESH-PEF5201-en
    Title

    SANOIA : An online Patient Personal Health Record
    Abbreviation or Acronym

    SANOIA
    Country
    Name Country code
    France fr
    Kind of Data

    ['Participant-reported health data']
    Unit of Analysis

    Individuals

    Scope

    Topics
    Topic Vocabulary
    Hematology health theme
    Rheumatology health theme
    Behavioral determinants health determinant
    Healthcare system determinants: Use of care health determinant
    Healthcare system determinants health determinant
    Keywords
    Rheumatology Patient reported Outcomes (PRO) treatment RAID score RAPID-3 score quality of life Electronic Health Data

    Coverage

    Universe

    {
    "level_sex_clusion_I": [
    {
    "value": "Male",
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D008297"
    }
    },
    {
    "value": "Female",
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D005260"
    }
    }
    ],
    "level_age_clusion_I": [
    {
    "value": "Young Adult (19 to 24 years)",
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D055815"
    }
    },
    {
    "value": "Adult (25 to 44 years)",
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D000328"
    }
    },
    {
    "value": "Middle Aged (45 to 64 years)",
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D008875"
    }
    },
    {
    "value": "Aged (65 to 79 years)",
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D000368"
    }
    },
    {
    "value": "Aged, 80 and over (80 years and more)",
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D000369"
    }
    }
    ],
    "level_type_clusion_I": [
    "Patients population"
    ],
    "level_type_clusion_other": "",
    "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).",
    "clusion_E": ""
    }

    Producers and sponsors

    Primary investigators
    Name
    Adam;SELAMNIA
    Hervé;SERVY
    Producers
    Name Role
    E-HEALTH SERVICES SANOIA sponsor
    sponsor
    Funding Agency/Sponsor
    Name
    AMGEN
    CENTRE NATIONAL DE LA RECHERCHE SCIENTIFIQUE (CNRS)
    UCB PHARMA (FRANCE)

    Sampling

    Sample frame

    Unit Type

    ['Through organizations (health services or institutions, schools, businesses, etc.)']
    Sampling Procedure

    ['{"concept":{"vocabURI":"Other","vocab":"CESSDA"},"value":"Other"}']

    Survey instrument

    Questionnaires

    Access on specific project only
    Methodology notes

    Observational Study

    Data collection

    Dates of Data Collection
    Start End
    2010-01-01 3000-01-01
    Mode of data collection
    • {"concept":{"vocabURI":"Interview","vocab":"CESSDA"},"value":"Interview with the participant (including clinical)"}

    Study activities

    Study activities
    Type
    primary evaluation
    Description
    Health event/morbidity Health care consumption and services Quality of life/health perception

    Data Access

    Access conditions

    Open to any organization Research, private or public, but subject to instruction for an ethical notice issued by the French Society of Rheumatology.
    Availability Status

    {"value":"Restricted access","extLink":[{"title":"COAR","uri":"http://purl.org/coar/access_right/c_16ec"}]}

    Contacts

    Contacts
    Name Email
    Adam;SELAMNIA mselamnia@sanoia.com
    Hervé;SERVY hservy@sanoia.com

    Metadata production

    DDI Document ID

    FRESH-PEF5201-en
    Producers
    Name Affiliation
    Laurent CHICHE HOPITAL EUROPEEN MARSEILLE
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