The EUROSCA Natural History Study

NCT02440763 · tracked via the Priya Life Science Germany tracker

Sponsor

Ataxia Study Group

Phase

Observational

Started

2005-07

Last updated

2017-06-29

Condition(s) studied

Spinocerebellar Ataxia

Study summary

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

Sex

ALL

Min age

18 Years

Max age

—

Healthy volunteers

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.

Primary outcome measure(s)

Scale for the assessment and rating of ataxia (SARA) — Patients are first seen at a baseline visit, followed by annual visits for 3 years scheduled ± 3 months around the specified time point. After the initial 3 year observation period, visits are done at irregular intervals each time they went to hospital.
Progression of ataxia is measured using a newly developed and validated ataxia scale, SARA. SARA was evaluated in two large validation trials performed by the EUROSCA clinical group and was found to be easy to use, reliable, and valid.

Trial sites (16)

Facility	City	Region	Status
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

More Ataxia Study Group trials in Germany

Sporadic Degenerative Ataxia With Adult Onset: Natural History Study Recruiting

Official registry record

This page summarises publicly available registry data for informational purposes — not medical advice. Eligibility is determined by each study team; patients should discuss participation with their clinician.

View NCT02440763 on ClinicalTrials.gov ↗ ← All trials in Germany