Overview
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.
https://www.isciii.es/InformacionCiudadanos/Paginas/PoliticaPrivacidad.aspx
public
Demographics
Dataset
You can make a request and the case will be analysed depending on the objective: research or other interests.
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)
Contact
Avenida Monforte de Lemos 5, 28029 Madrid