Rare Diseases Clinical Trial
— ERN-RND regOfficial title:
European Registry on Rare Neurological Diseases
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.
Status | Not yet recruiting |
Enrollment | 5000 |
Est. completion date | December 2025 |
Est. primary completion date | November 2025 |
Accepts healthy volunteers | No |
Gender | All |
Age group | N/A and older |
Eligibility | Inclusion Criteria: Patients suffering of one of the rare neurological diseases indicated below or probands who are at risk to develop such a disease since they are first degree relatives of patients affected by a RND including: - Ataxia and HSP - Leukodystrophies - Frontotemporal Dementia - Dystonia, Paroxysmal Disorders and Neurodegeneration with Brain Iron Accumulation (NBIA) - Atypical Parkinsonism - Huntington's Disease & Choreas Exclusion Criteria: • Missing informed consent of the patient and/ or their parents |
Country | Name | City | State |
---|---|---|---|
n/a |
Lead Sponsor | Collaborator |
---|---|
University Hospital Tuebingen |
Type | Measure | Description | Time frame | Safety issue |
---|---|---|---|---|
Primary | Representative cohorts of RND patients | The register study aims to compile representative cohorts of RND patients and provide demographic data for the planning of translational studies. As all of the index diseases are rare the primary goal is to reach as large cohorts as possible. | Day 1 |
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