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    Overview
    Acronym
    SpainRDR
    Type of information
    Registry data
    Description

    SpainRDR aims to build the National Rare Diseases Registry in Spain based on the input of two different strategies: patient registries addressed to patient outcome research and population-based registries addressed to epidemiologic research and social and health systems planning. Data collection started in 2008.

    Funding

    public

    Free keywords
    Rare diseases
    Patient registries
    Topics
    Health status » Morbidity/disability » Disability
    Country(ies)
    Spain
    GEO coverage
    Nuts 2
    Target Population
    Patients
    Age range
    From 0 years to 100 years
    Number of observations
    22296
    Sex
    Both
    Data Collection Period
    Language(s)
    Spanish
    Updating Periodicity
    Daily
    Personal Identifier
    Patient identifier
    Level of aggregation
    Individual
    Permanent identifier of the data source
    https://registroraras.isciii.es
    Terms of data access - URL
    https://registroraras.isciii.es/Comun/Inicio.aspx
    Terms of data access

    You can make a request and the case will be analysed depending on the objective: research or other interests. 

    Regulations for data sharing

    The privacy policy is governed by ISCIII criteria and it is accessible on https://bit.ly/3BHbGNV. The registry has a system for downloading information depending on each type of user: patient (only their data); researcher (their patients); disease administrator (all cases of that disease); ISCIII administrator (all data) 

    Linkage possible
    Data Owner(s)
    INSTITUTO DE SALUD CARLOS III
    Contact name
    Instituto de Salud Carlos III
    Contact e-mail
    registro.raras@isciii.es
    Contact info (address)

    Avenida Monforte de Lemos 5, 28029 Madrid