Observing the natural progression of spinocerebellar ataxia
The EUROSCA Natural History Study
This study looks at how different types of spinocerebellar ataxia progress over time to help understand the disease better and improve care for those affected.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 400 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | Ataxia Study Group Academic / other |
| Locations | 16 sites (Innsbruck and 15 other locations) |
| Trial ID | NCT02440763 on ClinicalTrials.gov |
What this trial studies
The EUROSCA Natural History Study aims to determine and compare the rate of disease progression in various types of spinocerebellar ataxia (SCA1, SCA2, SCA3, and SCA6). It utilizes a validated ataxia scale to assess symptoms and quality of life, while also identifying predictors of disease progression and survival. The study includes substudies that focus on brain atrophy through MRI and the progression of peripheral neuropathy. This observational approach will provide valuable insights into the natural history of these conditions.
Who should consider this trial
Good fit: Ideal candidates include individuals with progressive, unexplained ataxia who have tested positive for SCA1, SCA2, SCA3, or SCA6.
Not a fit: Patients without a confirmed genetic diagnosis of the specified types of spinocerebellar ataxia may not benefit from this study.
Why it matters
Potential benefit: If successful, this study could enhance understanding of spinocerebellar ataxia progression, leading to improved patient management and treatment strategies.
How similar studies have performed: Other studies focusing on the natural history of neurodegenerative diseases have shown success in identifying disease progression patterns, making this approach promising.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion criteria: * Progressive, otherwise unexplained ataxia * Positive genetic testing for SCA1, SCA2, SCA3, and SCA6 * Written informed consent by the patient or his legal agent Exclusion criteria: None.
Where this trial is running
Innsbruck and 15 other locations
- Department of Neurology, Medical University, Innsbruck — Innsbruck, Austria (Active_not_recruiting)
- Université Libre de Bruxelles (ULB), Neurology Service - ULB Hôpital Erasme, ULB Laboratory of Experimental Neurology — Brussels, Belgium (Active_not_recruiting)
- Hôpital de la Pitié-Salpêtrière, Département de Génétique — Paris, France (Active_not_recruiting)
- Department of Neurology, St. Josef Hospital, University Hospital of Bochum — Bochum, Germany (Active_not_recruiting)
- Department of Neurology, University of Bonn — Bonn, Germany (Recruiting)
- Department of Neurology, University Clinic Essen, University of Duisburg-Essen — Essen, Germany (Active_not_recruiting)
- Department of Neurology, University of Frankfurt — Frankfurt, Germany (Active_not_recruiting)
- Department of Neurodegeneration and Hertie-Institute for Clinical Brain Research, University of Tübingen — Tübingen, Germany (Active_not_recruiting)
- Department of Medical Genetics, University of Pecs — Pécs, Hungary (Active_not_recruiting)
- Department of Neurology, Zala County Hospital — Zalaegerszeg, Hungary (Active_not_recruiting)
- Fondazione-IRCCS Istituto Neurologico Carlo Besta — Milan, Italy (Active_not_recruiting)
- Department of Neuroscience, Federico II University Naples — Naples, Italy (Active_not_recruiting)
- Radboud University Medical Center, Department of Neurology, Donders Institute for Brain, Cognition, and Behaviour — Nijmegen, Netherlands (Active_not_recruiting)
- Institute of Psychiatry and Neurology — Warsaw, Poland (Active_not_recruiting)
- University Hospital Marqués de Valdecilla (IDIVAL), University of Cantabria — Santander, Spain (Active_not_recruiting)
- Institute of Neurology — London, United Kingdom (Active_not_recruiting)
Study contacts
- Study coordinator: Thomas Klockgether, Prof. Dr.
- Email: thomas.klockgether@ukb.uni-bonn.de
- Phone: +4922828715736
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.