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Therapeutic management of adult or child patients with hemophilia A : A retrospective observational study - HEMONIS study

France, 2016 - 2018
Reference ID
FRESH-PEF74089-en
Metadata
DDI/XML JSON
Study website Interactive tools
Created on
Feb 18, 2026
Last modified
Feb 18, 2026
Page views
50
  • Study Description
  • Get Microdata
  • Identification
  • Scope
  • Coverage
  • Producers and sponsors
  • Study authorization
  • Sampling
  • Survey instrument
  • Data collection
  • Quality standards
  • Data Access
  • Contacts
  • Identification

    Survey ID number

    FRESH-PEF74089-en

    Title

    Therapeutic management of adult or child patients with hemophilia A : A retrospective observational study - HEMONIS study

    Abbreviation or Acronym

    HEMONIS

    Country
    Name Country code
    France fr
    Kind of Data

    ['Clinical data','Participant-reported health data']

    Unit of Analysis

    Individuals

    Scope

    Topics
    Topic Vocabulary
    Hematology health theme
    Hereditary factor VIII deficiency cim-11
    Healthcare system determinants: Use of care health determinant
    Healthcare system determinants health determinant
    Keywords
    emicizumab

    Coverage

    Universe

    {"level_sex_clusion_I":[{"value":"Male","concept":{"vocab":"MeSH","vocabURI":"D008297"}},{"value":"Female","concept":{"vocab":"MeSH","vocabURI":"D005260"}}],"level_age_clusion_I":[{"value":"Child (6 to 12 years)","concept":{"vocab":"MeSH","vocabURI":"D002648"}},{"value":"Adolescent (13 to 18 years)","concept":{"vocab":"MeSH","vocabURI":"D000293"}},{"value":"Young Adult (19 to 24 years)","concept":{"vocab":"MeSH","vocabURI":"D055815"}},{"value":"Adult (25 to 44 years)","concept":{"vocab":"MeSH","vocabURI":"D000328"}},{"value":"Middle Aged (45 to 64 years)","concept":{"vocab":"MeSH","vocabURI":"D008875"}},{"value":"Aged (65 to 79 years)","concept":{"vocab":"MeSH","vocabURI":"D000368"}},{"value":"Aged, 80 and over (80 years and more)","concept":{"vocab":"MeSH","vocabURI":"D000369"}}],"level_type_clusion_I":"Patients population","level_type_clusion_other":"","clusion_I":"Inclusion criteria: o Patient aged ≥ 5 years old o Patient with moderate or severe constitutional o Patient with a last visit within the last 2 years o Patient followed in the same center for 2 years previous to the last visit, or patient followed in the same center from initial diagnosis, whichever is the shortest as collected in eCRF ","clusion_E":"o Patient who has received written information and expressed his/her refusal to participate in the study, or minor patient for whom at least one parent or guardian has expressed a refusal to participate in the study as checked by programming (patients without information date) o Patient included in a clinical trial at the date of last visit as collected in eCRF"}

    Producers and sponsors

    Producers
    Name Role
    F. HOFFMANN-LA ROCHE AG sponsor

    Study authorization

    Agency
    Agency name
    Other

    Sampling

    Sample frame

    Unit Type

    ['Through independent healthcare practitioners']

    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
    2016-01-01 2018-01-01
    Mode of data collection
    • {"concept":{"vocabURI":"Transcription","vocab":"CESSDA"},"value":"Converting or copying information into a structured record"}

    Quality standards

    Quality standards
    Standard
    ['CDISC like']
    Other quality statement

    ['GCP/GVP']

    Data Access

    Availability Status

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

    Contacts

    Contacts
    Name Email
    ;Medical data center data_sharing.france@roche.com
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