Table 3.
Summary of international SCA research cohorts.
Research consortium | Genetic ataxia | Biomarker sample type | Imaging studies | Target sample size | Participating countries and funding sources | Time period |
---|---|---|---|---|---|---|
Clinical Research Consortium for Spinocerebellar Ataxias (CRC‐SCA) 97 | SCA1 | Blood | MRI/MRS at 4 sites | 800 | Country: USA | 2010‐present |
SCA2 | Funding: National Ataxia Foundation; National Institute of Neurological Disorders and Stroke (NINDS) of the National Institute of Health (NIH) | |||||
SCA3 | ||||||
SCA6 | ||||||
SCA7 | ||||||
SCA8 | ||||||
SCA10 | ||||||
European Integrated Project on Spinocerebellar Ataxias (EUROSCA) 2 , 47 | SCA1 | Blood | MRI | 1255 | Countries: Germany, Spain, France, Italy, UK, Netherlands, Belgium, Poland, Hungary | 2005–2016 |
SCA2 | Urine | Funding: European Union Sixth Framework Programme FP‐6 | ||||
SCA3 | ||||||
SCA6 | ||||||
European Spinocerebellar Ataxia Type 3/Machado‐Joseph Disease Initiative (ESMI) 136 | SCA3 | Blood | MRI | 800 | Countries: Germany, UK, Portugal, Netherlands | 2016‐present |
CSF | Funding: EU Joint Programme – Neurodegenerative Disease Research (JPND); German Ministry of Education and Research; Medical Research Council (MRC, United Kingdom); Fundação para a Ciência e a Tecnologia (FCT; Portugal); Netherlands Organisation for Health Research and Development | |||||
Individuals at Risk for SCA (RISCA) 62 | SCA1 | Blood | MRI at 8 sites | 480 | Countries: France, Austria, Germany, Hungary, Italy, Poland, Spain | 2009‐present |
SCA2 | Urine | Funding: European Research Area Network for Research Programmes on Rare Diseases, Polish Ministry of Science and Higher Education, Italian Ministry of Health, European Community's Seventh Framework Programme | ||||
SCA3 | ||||||
SCA6 | ||||||
Clinical trial Readiness for SCA1 & SCA3 (READISCA) 97 | Early‐stage SCA1 and SCA3 | Blood | MRI/MRS at 6 sites in 3 countries | 200 | Countries: USA, Germany, France, UK, Poland, Hungary, Italy, Austria, Belgium, Portugal, Spain, Netherlands, Norway, Denmark, Serbia, Egypt, Morocco | 2018‐present |
Funding: National Institute of Neurological Disorders and Stroke (NINDS) of the National Institute of Health (NIH); National Ataxia Foundation | ||||||
SCA3 Biomarkers and Genetic modifiers in a Study pre‐ and post‐symptomatic carriers (BIGPRO) 137 | SCA3 | Blood | Not applicable | 95 | Countries: Brazil, Germany | 2017–2020 |
Funding: CAPES Foundation |