ERN-RND Registry
European Reference Network on Rare Neurological Diseases (ERN-RND), hosted by University Hospital Tübingen
The ERN-RND Registry collects standardised patient data from the network's expert centres across six groups of rare neurological diseases — ataxias, choreas, dystonias, frontotemporal dementia, leukodystrophies and atypical parkinsonism — and is hosted by University Hospital Tübingen. A Data Access Committee reviews requests from clinicians, researchers, health authorities and patient organisations for aggregated or pseudonymised patient-level data.
Category
Research database
Access
By application
Region
Europe
Coverage
European Reference Network centres
Data types
rare disease registry, patient-level clinical data