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Cohort Acronym

Cohort type
Neurodegenerative disease-specific cohort

Spinocerebellar ataxia (SCA)

Participant type
Condition diagnosed

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 

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 
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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