The EUROSCA Natural History Study
The EUROSCA Natural History Study aims to understand how Spinocerebellar Ataxia (SCA) types 1, 2, 3, and 6 develop and progress. Researchers are observing how the disease changes over time, including balance and coordination problems, and other symptoms that are not just about movement. They are also looking at how SCA affects daily activities and overall quality of life. A main goal is to find out what might cause the disease to get better or worse, and what factors could influence how long someone lives with the condition. This study will use a special scale to measure ataxia and will also involve looking at brain changes with MRI scans and nerve health. Understanding these aspects helps improve awareness and future treatments.
At a glance
What is this study about?
This study, called "EUROSCA Natural History Study," is all about understanding Spinocerebellar Ataxia (SCA), specifically types 1, 2, 3, and 6. Think of a "natural history study" like observing how a plant grows from a seed, blooms, and eventually fades. Here, researchers are watching how these types of SCA develop and change over time in people.
The main aim is to learn how quickly these conditions progress. They want to see which symptoms appear and in what order, including those that don't just affect movement and balance. The study also explores how SCA impacts daily tasks, like getting dressed or eating, and overall quality of life. By understanding these patterns, researchers hope to find clues about what might predict how the disease will progress for different individuals.
To do this, they will use a special tool called SARA (Scale for the Assessment and Rating of Ataxia) to measure balance and coordination. They will also look at other things like changes in the brain using MRI scans and check nerve health. All this information helps scientists gain a clearer picture of SCA, which is really important for developing better ways to manage the condition and, eventually, find treatments.
Key takeaways
- Helps understand how SCA types 1, 2, 3, and 6 change over time.
- Looks at symptoms beyond just balance issues and how they affect daily life.
- Aims to find clues about how the disease might progress for different people.
- Uses special scales, MRI scans, and nerve tests to gather information.
- Participation helps future research and awareness of SCA.
Who may be eligible?
To join this study, people must be at least 18 years old. They need to have a type of ataxia (problems with balance and coordination) that doctors can't explain in any other way and that has been getting worse over time.
Crucially, participants must have had a genetic test that confirms they have Spinocerebellar Ataxia type 1, 2, 3, or 6. If you meet these conditions, and are willing to give your informed consent (meaning you understand the study and agree to take part), then you might be able to join.
There are no specific reasons that would prevent someone from joining, as long as they meet the requirements mentioned above. Both men and women are welcome to participate.
Could this study suit you?
Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.
- Are you 18 years old or older?
- Do you have problems with balance and coordination that doctors can't explain?
- Has a genetic test confirmed you have SCA type 1, 2, 3, or 6?
- Are you able to provide written consent to participate?
What does participation involve?
If you take part in this study, doctors and researchers will observe you over time. They will use a special scale to measure your balance and coordination during your visits. They will also talk to you about your daily activities and how the condition affects your quality of life. Some parts of the study might include brain scans using MRI, and tests to see how well your nerves are working. The study is about observing your condition as it naturally progresses, so you won't be given any new medications or treatments as part of this specific study.
Potential risks and benefits
Locations (16)
- Department of Neurology, Medical University, InnsbruckVerified postcodeInnsbruck, Austria· Active not recruiting
- Université Libre de Bruxelles (ULB), Neurology Service - ULB Hôpital Erasme, ULB Laboratory of Experimental NeurologyVerified postcodeBrussels, Belgium· Active not recruiting
- Hôpital de la Pitié-Salpêtrière, Département de GénétiqueVerified postcodeParis, France· Active not recruiting
- Department of Neurology, St. Josef Hospital, University Hospital of BochumVerified postcodeBochum, Germany· Active not recruiting
- Department of Neurology, University of BonnVerified postcodeBonn, Germany· Recruiting
- Department of Neurology, University Clinic Essen, University of Duisburg-EssenVerified postcodeEssen, Germany· Active not recruiting
- Department of Neurology, University of FrankfurtVerified postcodeFrankfurt, Germany· Active not recruiting
- Department of Neurodegeneration and Hertie-Institute for Clinical Brain Research, University of TübingenVerified postcodeTübingen, Germany· Active not recruiting
- Department of Medical Genetics, University of PecsVerified postcodePécs, Hungary· Active not recruiting
- Department of Neurology, Zala County HospitalVerified postcodeZalaegerszeg, Hungary· Active not recruiting
- Fondazione-IRCCS Istituto Neurologico Carlo BestaVerified postcodeMilan, Italy· Active not recruiting
- Department of Neuroscience, Federico II University NaplesVerified postcodeNaples, Italy· Active not recruiting
Common questions
What is Spinocerebellar Ataxia (SCA)?
SCA is a group of conditions that cause problems with balance and coordination due to changes in the brain, specifically the cerebellum. It's often inherited.
What does 'natural history' mean in this study?
It means the study observes how the disease progresses and changes over time, without trying new treatments. It's like watching the condition unfold naturally.
Will I receive any new treatment if I join this study?
No, this study is about observing the condition, not testing new treatments. You will continue to receive any standard care your doctor recommends.
How long will I need to be in the study?
The study description doesn't specify the exact duration, but natural history studies often involve regular check-ups over an extended period to track changes.
Will my information be kept private?
Yes, all your personal and medical information will be kept confidential and used only for research purposes, usually in a way that doesn't identify you directly.
How to find out more
Thomas Klockgether, Prof. Dr.
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
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