For People with Cerebellar Ataxia

For People with Cerebellar Ataxia

Taking part in research as participants in trials is a wonderful way to get us ever closer to finding a cure. Listed below are some current research projects recruiting for participants with cerebellar ataxia.

POLG-related mitochondrial disease and ataxia study - Newcastle University is recruiting individuals aged 16 - 75 with a genetically confirmed diagnosis of POLG-related mitochondrial disease to take part in a study looking at movement, balance and co-ordination in this condition. The study is in-person and will involve assessments at three timepoints over 12 months.

SCA6 and SCA27B survey - a 30-minute online survey to understand the genetic and environmental factors that influence the onset, severity and progression of SCA6 and SCA27B. This survey is being conducted by the University of Chicago and is for those aged 18 years and above with a confirmed diagnosis of either SCA6 or SCA27B.

Improving diagnosis and management of gluten ataxia Study - Ataxia UK, Coeliac UK, the Sheffield Hospital Charity and the Greaves and Withey Foundation awarded funding to Professor Marios Hadjivassiliou, at the Sheffield Ataxia Centre and colleagues, to help improve the diagnosis and management of gluten ataxia.

Strathclyde University Speech Disorders in CANVAS Study - an online study of speech disorders in Cerebellar Ataxia with Neuropathy and Vestibular Areflexia Syndrome (CANVAS). Participation involves joining a one-off online video session to assess speech and thinking skills, and to answer some questions about how speech difficulties affect daily life.

London Ataxia Centre SCA1 and SCA3 trial - this phase 1/2a trial will assess the safety and tolerability of a therapy developed by the pharmaceutical company Vico Therapeutics, known as VO659. VO659 is a small piece of genetic material that targets mutated genes.

Newcastle R-PROMS Study - a study that aims to investigate whether online assessments can be used to measure the severity of ataxia (movement, balance and co-ordination difficulties) in people with Mitochondrial Disease and Spinocerebellar ataxia.

A retrospective study of people with mutations in the C12ORF65 gene, causing complex Charcot-Marie-Tooth disease type 6 (CMT Type 6).

Project ESMI - aims to develop disease markers, and understand the progression of SCA3.

DRPLA Natural History and Biomarker Study - Ataxia UK and CureDRPLA are coordinating the DRPLA Natural History and Biomarker Study for this very rare form of ataxia. The funding for the study is provided by CureDRPLA. This is a global study, including a UK site at the London Ataxia Centre, which is now recruiting participants. Individuals in countries with no study sites might also be able to participate in this study. See the flyer for more information.