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.

SIMPATHIC SCA3 focus group - a 60-90 minute online focus group with 3-6 participants to understand the problems faced by those with rare neurological conditions including SCA3. The researchers intend to use the feedback from the focus group to improve future research questionnaires on SCA3. If preferred, participants can instead take part in a one-to-one online interview for up to 60 minutes with a researcher instead of in the group setting.

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 ataxias Study - a fully remote study of speech disorders in various ataxias, including Cerebellar Ataxia with Neuropathy and Vestibular Areflexia Syndrome (CANVAS), Gluten Ataxia, Spastic Paraplegia Type-7 (SPG-7) and Paraneoplastic Cerebellar Ataxia. 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.

HANDETECT study - a remote study looking at the effects of ataxias on handwriting. Available to people with any type of 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.