University Hospital Tuebingen
Prof. Dr. Ludger Schöls
The recent implementation of European Reference Networks for Rare Diseases (ERNs) is an unprecedented move to improve the care of patients suffering from rare health disorders by transnational collaboration. ERN-RND, the ERN for Rare Neurological Diseases, oversees more than 35,000 patients in 31 specialist centers in 13 countries. The ERN-RND registry aims to gather information on patient cohorts in the multiple specialist centers and to provide an overview on patient numbers principally accessible for translational studies.
Data set as defined by the ERN Research Workgroup of the European Commission
The ERN-RND (European Reference Network on Rare Neurological Diseases) Registry aims to establish a demographic platform for collection of relevant core patient information. This will be accomplished by the construction and implementation of a single data base encompassing all rare neurological diseases in pediatric and adult patients (the ERN-RND Registry), which will collect information according to the "Set of common data elements for Rare Diseases Registration" as it has been defined by the European Commission. The ERN-RND network covers the following six disease groups in patients of all age groups: (i) Ataxia and Hereditary Spastic Spinal Paralysis (HSP), (ii) Leukodystrophies, (iii) Frontotemporal Dementia, (iv) Dystonia, Paroxysmal Disorders and Neurodegeneration with Brain Iron Accumulation (NBIA), (v) Atypical Parkinsonism and (vi) Huntington's Disease & Choreas.
|Study Type :||Observational|
|Estimated Enrollment :||5000 participants|
|Official Title:||European Registry on Rare Neurological Diseases|
|Actual Study Start Date :||October 2021|
|Estimated Primary Completion Date :||November 2025|
|Estimated Study Completion Date :||December 2025|
Information not available for Arms and Intervention/treatment
|Ages Eligible for Study:|
|Sexes Eligible for Study:||All|
|Accepts Healthy Volunteers:||No|
Want to participate in this study, select a site at your convenience, send yourself email to get contact details and prescreening steps.