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NCT04319796 | Not yet recruiting | Rare Diseases


European Registry on Rare Neurological Diseases
Sponsor:

University Hospital Tuebingen

Information provided by (Responsible Party):

Prof. Dr. Ludger Schöls

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 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.

Condition or disease

Rare Diseases

Intervention/treatment

Data set as defined by the ERN Research Workgroup of the European Commission

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 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
Criteria
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

European Registry on Rare Neurological Diseases

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European Registry on Rare Neurological Diseases

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