Status:
UNKNOWN
European Registry on Rare Neurological Diseases
Lead Sponsor:
University Hospital Tuebingen
Conditions:
Rare Diseases
Eligibility:
All Genders
Brief Summary
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 collabo...
Detailed Description
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 ...
Eligibility Criteria
Inclusion
- 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
- • Missing informed consent of the patient and/ or their parents
Key Trial Info
Start Date :
October 1 2021
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
December 1 2025
Estimated Enrollment :
5000 Patients enrolled
Trial Details
Trial ID
NCT04319796
Start Date
October 1 2021
End Date
December 1 2025
Last Update
September 29 2021
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