ClinicalTrials.gov record NCT02440763

The EUROSCA Natural History Study

Record copied from ClinicalTrials.gov: Oct 10, 2026AI summaries generated: Sep 17, 2026

The EUROSCA Natural History Study

StatusRecruitingThe study is currently enrolling participants. Only the study team can say whether a particular person can join.The registry record was last updated on Jun 29, 2017, about 9 years ago, so the status shown may be out of date. The study team or the registry can confirm.
Study typeObservationalA study in which researchers do not assign participants to a treatment or other intervention. They observe or measure what happens, which may include study visits, tests, questionnaires or a review of medical records.
Age18 years old and older
SexAll
LocationAustria, Belgium, France, Germany, Hungary, Italy, Netherlands, Poland, Spain, United Kingdom
AI summaryWhat this study is about, in plain languageShow ▾Hide ▴

AI-written from the registry record, not the study's own wording. May contain errors or omissions. Check the registry text on this page and the original record ↗ before acting on it.

This is a prospective observational study of people with genetically confirmed SCA1, SCA2, SCA3, or SCA6. Participants are assessed with a validated ataxia scale (SARA) at a baseline visit and then annually for three years, with irregular follow-up visits thereafter. Substudies include brain MRI for atrophy and nerve conduction studies for peripheral neuropathy.

What it is studying. The study is measuring and comparing how fast disability progresses in SCA1, SCA2, SCA3, and SCA6. It records when and how non-ataxia symptoms appear, tracks daily function and quality of life, and seeks clinical predictors of disease progression and survival. The main measurement is the SARA ataxia scale; other clinical scales, questionnaires, MRI and nerve-conduction tests are used in secondary and substudy assessments.

What the researchers hope to learn. Scientific goals: determine and compare the rate of disease progression in SCA1, SCA2, SCA3 and SCA6; describe the order and occurrence of non-ataxia symptoms; assess activities of daily living and quality of life; and identify predictors of disease progression and survival. Substudies aim to chart brain atrophy development and progression of peripheral neuropathy and to study specific clinical aspects of SCA.

What this study is about

The study's own summary, as published on ClinicalTrials.gov. Underlined terms have a short explanation.

The key goals of EUROSCA-NHS is to determine and compare the rate of disease progression in SCA1, SCA2, SCA3 and SCA6 including determination of the order and occurrence of non-ataxia symptoms, assessment of activities of daily living (ADL) and quality of life (QoL), and identification of predictors of disease progression and survival.

Eligibility

The criteria exactly as listed on ClinicalTrials.gov. Only the study team can say whether they apply to you.

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.

Study description and what participation involves

The study's detailed description, as published on ClinicalTrials.gov.

Detailed description from the registry

The key goal of EUROSCA-NHS is to determine and compare the rate of disease progression in SCA1, SCA2, SCA3 and SCA6. To this end, a newly developed and validated ataxia scale (Scale for the Assessment and Rating of Ataxia, SARA) will be used. EUROSCA-NHS has a number of secondary aims including determination of the order and occurrence of non-ataxia symptoms, assessment of activities of daily living (ADL) and quality of life (QoL), and identification of predictors of disease progression and survival. Substudies will deal with the development of brain atrophy, as assessed by magnetic resonance imaging (MRI), progression of peripheral neuropathy, as assessed by nerve conduction studies, and specific clinical aspects of SCA.

AI summaryWhat participation may involve, in plain languageShow ▾Hide ▴

AI-written from the registry record, not the study's own wording. May contain errors or omissions. Check the registry text on this page and the original record ↗ before acting on it.

Participants have a baseline visit, then annual visits for three years (each visit scheduled ±3 months), after which visits occur at irregular intervals when they attend the hospital. At visits they receive clinical ataxia assessments using an ataxia rating scale (SARA), disease-stage and non‑ataxia symptom assessments (INAS), and complete questionnaires on daily function (UHDRS part IV), quality of life (EQ-5D), and depressive symptoms (PHQ-9). Some participants may take part in substudies that include brain MRI scans to assess atrophy and nerve conduction studies to assess peripheral neuropathy, plus additional clinical exams as specified. This is an observational natural-history study; no investigational treatments are assigned by the study.

How the study is structured. A prospective observational cohort study. Participants have a baseline visit, then annual visits for three years (scheduled ±3 months), then return visits at irregular intervals when they attend the hospital. Assessments include the SARA ataxia scale, measures of non-ataxia signs, questionnaires about daily function and quality of life, and substudies using brain MRI and nerve conduction testing.

Questions you could ask

These questions are suggestions for a conversation with the study team or your own clinician, not advice.

  • This is an observational study, so the study itself gives no treatment. What would taking part involve for me, and would it change my usual care?
  • The listed sites are in Austria, Belgium, France, Germany, Hungary, Italy, Netherlands, Poland, Spain, United Kingdom. Is any of them reachable for me, and does the study help with travel?
  • Which of the eligibility criteria would need to be checked with tests before I could join?

More on spinocerebellar ataxia

Clinical trials30 trials listed for spinocerebellar ataxiaEvery trial the registry lists for spinocerebellar ataxia, with recruitment status, phase and sites, updated from ClinicalTrials.gov.See all trials →Research updatesWhat changed in spinocerebellar ataxia researchLatest monthly update: September 2026. Includes: NBP trial result. New research summarized each month in plain language, with links to every source paper.Read the latest update →

Important dates

Study start
July 2005
Primary completion
July 2050 (estimated)
Study completion
July 2050 (estimated)
Target enrollment
400 participants (estimated)
Last updated on registry
Jun 29, 2017
Data verified
Oct 10, 2026

Sponsor and research team

The lead sponsor funds and oversees the trial. A pharmaceutical or biotech company sponsor typically means the study is testing that company's drug or device; a hospital, university, or government agency usually indicates investigator-initiated or publicly funded research.

Lead sponsor
Ataxia Study Group

Central study contact

If you're interested in participating, the central contact can answer general questions about the study — including eligibility requirements and how to find a recruiting site near you. Actual eligibility is determined by the site's medical team.

Participating sites (16)

  • Department of Neurology, Medical University, InnsbruckActive Not Recruiting

    Innsbruck · Austria

  • Université Libre de Bruxelles (ULB), Neurology Service - ULB Hôpital Erasme, ULB Laboratory of Experimental NeurologyActive Not Recruiting

    Brussels · Belgium

  • Hôpital de la Pitié-Salpêtrière, Département de GénétiqueActive Not Recruiting

    Paris · France

  • Department of Neurology, St. Josef Hospital, University Hospital of BochumActive Not Recruiting

    Bochum · Germany

  • Department of Neurology, University of BonnRecruiting

    Bonn, 53105 · Germany

  • Department of Neurology, University Clinic Essen, University of Duisburg-EssenActive Not Recruiting

    Essen · Germany

  • Department of Neurology, University of FrankfurtActive Not Recruiting

    Frankfurt · Germany

  • Department of Neurodegeneration and Hertie-Institute for Clinical Brain Research, University of TübingenActive Not Recruiting

    Tübingen · Germany

  • Department of Medical Genetics, University of PecsActive Not Recruiting

    Pécs · Hungary

  • Department of Neurology, Zala County HospitalActive Not Recruiting

    Zalaegerszeg · Hungary

Terms used on this page · explanations by MedicalUpdates.ai

Written informed consent
The process of explaining a study, including its risks and what participation involves, so that a person can decide freely whether to take part. Consent is usually documented in writing, and a participant can choose to leave the study later.
Inclusion criteria
The conditions a person must meet to be considered for the study, for example a confirmed diagnosis, an age range or a test result.
Exclusion criteria
The conditions that rule a person out even if they meet the inclusion criteria, for example other illnesses, certain medicines or pregnancy.
magnetic resonance imaging
A scan that uses magnets and radio waves, not X-rays, to make detailed pictures of the inside of the body. Some implants and metal objects mean a person cannot have one.

The study record on this page is reproduced from ClinicalTrials.gov, a database of the U.S. National Library of Medicine, where it was submitted by the study sponsor. MedicalUpdates.ai does not own this content, is not affiliated with or endorsed by ClinicalTrials.gov, NIH, or the U.S. Government, and does not verify the record. Plain-language notes, the glossary and the questions above are added by this site; text in the boxes marked "AI summary" was written by an AI model and may contain errors. Registry records change over time. Check the original record for the current version and discuss eligibility or participation with a qualified healthcare professional.

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