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French Rare Eye Disease Database

France, 2024 - 3000
Reference ID
FReSH-43701-en
Producer(s)
Hélène ;DOLLFUS
Metadata
DDI/XML JSON
Study website Interactive tools
Created on
Sep 17, 2026
Last modified
Oct 07, 2026
Page views
16
  • Identification
  • Scope
  • Coverage
  • Producers and sponsors
  • Study authorization
  • Sampling
  • Survey instrument
  • Data collection
  • Study activities
  • Quality standards
  • Data Access
  • Contacts
  • Metadata production

    • Identification

    Survey ID number

    FReSH-43701-en
    Title

    French Rare Eye Disease Database
    Abbreviation or Acronym

    FREDD
    Country
    Name Country code
    France fr
    Abstract

    FREDD (short for French Rare Eye Diseases Database) is much more than just a database. It is a nationwide Health Data Warehouse (HDW), designed to centralize and securely store medical information on patients with rare eye diseases and their families. Integrated at the heart of the SENSGENE healthcare network, FREDD collects valuable data on complex retinal conditions, such as retinitis pigmentosa, Stargardt disease, Usher syndrome, and many others.
    Kind of Data

    ['Clinical data','Paraclinical data (non-biological)','Paraclinical data (non-biological) : Imaging','Genetic / genomic data']
    Unit of Analysis

    Individus

    Scope

    Topics
    Topic Vocabulary
    Medical genetics health theme
    Ophthalmology health theme
    Inherited retinal dystrophies cim-11
    Biological determinants health determinant
    Biological determinants: Genetic predisposition health determinant
    Keywords
    retinitis pigmentosa rare eye disease health data warehouse EDS SENSGENE INSERM inherited retinal dystrophies

    Coverage

    Universe

    {
    "level_sex_clusion_I": [
    {
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "D005260"
    },
    "value": "Female"
    },
    {
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "D008297"
    },
    "value": "Male"
    },
    {
    "concept": {
    "vocab": "MeSH",
    "vocabURI": ""
    },
    "value": "Other"
    }
    ],
    "level_age_clusion_I": [
    {
    "concept": {
    "vocab": "MeSH",
    "vocabURI": ""
    },
    "value": "Prenatal"
    },
    {
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "D007231"
    },
    "value": "Infant, Newborn (birth to 28 days)"
    },
    {
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "D007223"
    },
    "value": "Infant (28 days to 2 years)"
    },
    {
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "D002675"
    },
    "value": "Child, Preschool (2 to 5 years)"
    },
    {
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "D002648"
    },
    "value": "Child (6 to 12 years)"
    },
    {
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "D000293"
    },
    "value": "Adolescent (13 to 18 years)"
    },
    {
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "D055815"
    },
    "value": "Young Adult (19 to 24 years)"
    },
    {
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "D000328"
    },
    "value": "Adult (25 to 44 years)"
    },
    {
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "D008875"
    },
    "value": "Middle Aged (45 to 64 years)"
    },
    {
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "D000368"
    },
    "value": "Aged (65 to 79 years)"
    },
    {
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "D000369"
    },
    "value": "Aged, 80 and over (80 years and more)"
    }
    ],
    "level_type_clusion_I": "Patients population",
    "level_type_clusion_other": "",
    "clusion_I": "Suffering from a rare eye disease",
    "clusion_E": ""
    }

    Producers and sponsors

    Primary investigators
    Name
    Hélène ;DOLLFUS
    Producers
    Name Role
    INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE (INSERM) sponsor
    Funding Agency/Sponsor
    Name
    MINISTERE DE L’ENSEIGNEMENT SUPERIEUR, DE LA RECHERCHE ET DE L’ESPACE
    MINISTERE DU TRAVAIL, DE LA SANTE, DES SOLIDARITES ET DES FAMILLES
    Other Identifications/Acknowledgments
    Name
    CHNO 15-20, Strasbourg University Hospitals, Lille University Hospital, Nantes University Hospital, Montpellier University Hospital

    Study authorization

    Agency
    Agency name
    CNIL

    Sampling

    Sample frame

    Unit Type

    ['Other']
    Sampling Procedure

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

    Survey instrument

    Questionnaires

    Request to the data warehouse management team
    Methodology notes

    Observational Study

    Data collection

    Dates of Data Collection
    Start End
    2024-05-01 3000-01-01
    Time Method

    Other
    Frequency of Data Collection

    Daily - Weekly
    Mode of data collection
    • {"concept":{"vocab":"CESSDA","vocabURI":"Other"},"value":"Other"}

    Study activities

    Study activities
    Type
    primary evaluation
    Description
    Not appropriate
    Type
    secondary evaluation
    Description
    Not appropriate

    Quality standards

    Quality standards
    Standard
    ['SDM-MR, ORPHA, HPO, HGVS, HGNC, ATC']

    Data Access

    Access authority
    Name Email
    Equipe; FREDD contact-fredd@inserm.fr
    Citation requirements

    yes
    Deposit requirements

    no
    Availability Status

    {"extLink":{"title":"COAR","uri":"http://purl.org/coar/access_right/c_16ec"},"value":"Restricted access"}
    Special Permissions
    Indicate if special permissions are required to access a resource Special permissions description
    Yes https://fredd-eds.fr/demande-dacces-aux-donnees/

    Contacts

    Contacts
    Name Email
    Hélène ;DOLLFUS dollfus@unistra.fr

    Metadata production

    DDI Document ID

    FReSH-43701-en
    Producers
    Name
    Camille Marin
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