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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
Types Neurodegenerative disease-specific cohort
Participant Types Condition diagnosed
Countries Austria|Belgium|France|Germany|Hungary|Italy|Netherlands|Spain|United Kingdom
Genders Male and Female
Sample sizes 0 to 4,999
Ages 10 to 19|20 to 39|40 to 59|60 to 100
Brain related measures
Funtional rating Caregiver|Individual physiological|Individual psychological
Anthropometric Height|Weight
Physical
Biological samples Blood|Urine
Genotyping Gene screening
Brain imaging Magnetic resonance imaging (MRI)
Brain banking
Lifestyle Alcohol|Physical activity|Smoking
Socio-economic Housing and accommodation
Health service utilisation
Institute names Dept. of Neurology, University Hospital Bonn
Current Sample Sizes 0 to 4,999
age at recruitment >18
last updated
recruitment period Ongoing
estimated current sample size number value 730
cohort acronym EUROSCA
start date Ongoing
pi Prof. Thomas Klockgether
website http://www.ataxia-study-group.net/html/studies/eurosca
contact details Dept. of Neurology
University Hospital Bonn
Sigmund-Freud-Str. 25
D-53105 Bonn, Germany
abstract The key goal of EUROSCA-NHS is to determine and compare the rate of disease progression in SCA1, SCA2, SCA3 and SCA6. Recruitment is ongoing currently 730 participants over 18 years of age have been included.
funders Ataxia Study Group
contact email Email: [email protected] PI email: [email protected]
contact phone number
estimated current sample size 0 to 4,999
sample sizes 400