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Hereditary Retinal Dystrophy 2004

France, 2004 - 3000
Reference ID
FRESH-PEF60094-en
Producer(s)
José Alain;SAHEL
Metadata
DDI/XML JSON
Study website Interactive tools
Created on
Feb 18, 2026
Last modified
Feb 18, 2026
Page views
37
  • Identification
  • Scope
  • Coverage
  • Producers and sponsors
  • Study authorization
  • Sampling
  • Survey instrument
  • Data collection
  • Study activities
  • Data Access
  • Contacts

    • Identification

    Survey ID number

    FRESH-PEF60094-en
    Title

    Hereditary Retinal Dystrophy 2004
    Abbreviation or Acronym

    DMLA 2004
    Country
    Name Country code
    France fr
    Kind of Data

    ['Clinical data','Paraclinical data (non-biological)','Paraclinical data (non-biological) : Imaging','Biological data','Participant-reported health data']
    Unit of Analysis

    Individuals

    Scope

    Topics
    Topic Vocabulary
    Ophthalmology health theme
    Biological determinants: Genetic predisposition health determinant
    Biological determinants health determinant
    Keywords
    visual function Health episodes morphometric data retina impact quality of life assessment disability

    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":"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":"Individuals with hereditary retinal dystrophy Related individuals","clusion_E":""}

    Producers and sponsors

    Primary investigators
    Name
    José Alain;SAHEL
    Producers
    Name Role
    CENTRE HOSPITALIER NATIONAL D'OPHTALMOLOGIE QUINZE-VINGTS (CHNO XV XX) sponsor
    Funding Agency/Sponsor
    Name
    EUROPEAN COMMISSION RESEARCH
    AGENCE NATIONALE DE LA RECHERCHE (ANR)
    CENTRE HOSPITALIER NATIONAL D'OPHTALMOLOGIE QUINZE-VINGTS (CHNO XV XX)
    FONDATION POUR LA RECHERCHE MEDICALE
    FONDATION VOIR ET ENTENDRE
    INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE (INSERM)
    MINISTERE DE L’ENSEIGNEMENT SUPERIEUR, DE LA RECHERCHE ET DE L’ESPACE
    MINISTERE DU TRAVAIL, DE LA SANTE, DES SOLIDARITES ET DES FAMILLES

    Study authorization

    Agency
    Agency name
    CNIL

    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
    2004-01-01 3000-01-01
    Mode of data collection
    • {"concept":{"vocabURI":"SelfAdministeredQuestionnaire","vocab":"CESSDA"},"value":"Self-administered questionnaire"}
    • {"concept":{"vocabURI":"Interview","vocab":"CESSDA"},"value":"Interview with the participant (including clinical)"}

    Study activities

    Study activities
    Type
    primary evaluation
    Description
    Quality of life/health perception

    Data Access

    Availability Status

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

    Data may be used by academic teams

    Contacts

    Contacts
    Name Email
    José Alain;SAHEL j-sahel@quinze-vingts.fr
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