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Cohort Acronym
EUROSCA

Cohort type
Neurodegenerative disease-specific cohort

Disease
Spinocerebellar ataxia (SCA)

Participant type
Condition diagnosed

Profile
Recruitment Period Ongoing 
Sample size at start or planned sample size if still recruiting 400  
Estimated Current Sample Size 0 to 4,999 
Age at Recruitment >18   
Gender Male and Female 
Abstract

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.

Patients are first seen at a baseline visit, followed by annual visits for 3 years scheduled ﾱ 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.

Last update – 12/08/2017

 
Country Austria, Belgium, France, Germany, Hungary, Italy, Netherlands, Spain, United Kingdom 
Contact details
Institution name Dept. of Neurology, University Hospital Bonn 
Website http://www.ataxia-study-group.net/html/studies/eurosca 
Principal Investiator (PI) Prof. Thomas Klockgether 
Contact email Email: [email protected] PI email: [email protected] 
Contact phone number  
Address Dept. of Neurology
University Hospital Bonn
Sigmund-Freud-Str. 25
D-53105 Bonn, Germany 
Funders (Core support) Ataxia Study Group 

Variables Collected

Brain related measures: N/A
Funtional rating: Caregiver, Individual physiological, Individual psychological
Anthropometric: Height, Weight
Physical: N/A
Biological samples: Blood, Urine
Genotyping: Gene screening
Brain imaging: Magnetic resonance imaging (MRI)
Brain banking: N/A
Lifestyle: Alcohol, Physical activity, Smoking
Socio-economic: Housing and accommodation
Health service utilisation: N/A
 
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