Spanish Rare Diseases Registries Research Network

Overview
Acronym
SpainRDR
Type of information
Registry data
URL of the data source
https://spainrdr.isciii.es/es/Paginas/default.aspx
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.

Governance and legal framework

https://www.isciii.es/InformacionCiudadanos/Paginas/PoliticaPrivacidad.aspx

Funding

public

Free keywords
Rare diseases
Patient registries
Topics
Health status » Morbidity/disability » Disability
Country(ies):
GEO coverage
Nuts 2
Target Population
Patients
Age range
From 0 years to 100 years
Sex
Both
Data Collection Period
Language(s)
Spanish
Updating Periodicity
Daily
Personal Identifier
Patient identifier
Level of aggregation
Individual
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) 

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

Updated on 10 August 2022