The Neurogenetics Team is a diverse team made up of Clinical Geneticists, Genetic Counsellors, Neurologists, Research Psychologists, and Clinical Scientists who work collaboratively to deliver a varied portfolio of research interests for patients.
Other research interests include identifying new molecular insights into the pathogenesis of Hereditary Ataxia and qualitative research into the clinical impact of the disease. Dr John Ealing is on the medical advisory board of Ataxia UK. There is also ongoing research into the pathogenesis and management of Motor Neurone Disease with ongoing recruitment to MIRACALS, MND Registry, CSNAT-MND Carers Support and TONiC trials. dr Ealing is also the MND Care Centre Co-Director in Manchester.
All HD family members, whether affected, at-risk, HD gene negative are eligible to participate in existing research, integrated as part of our service to HD families in the North West of England.
- ENROLL–HD – The HD team at MCGM is a lead centre in the UK for the longitudinal observation study, ENROLL-HD. A key aim of this global research project is to collaborate with stakeholders to accelerate the development of disease modifying treatments for HD which, in turn, may change the landscape of the way other neurogenetic conditions are managed. The study is a clinical research platform that supports different clinical activities including the development of novel assessment tools, clinical endpoints and biomarkers and the design and conduct of clinical research studies and interventional trials.
- LEGATO-HD – This is a placebo-controlled trial, with participants randomly assigned to receive one of three different doses of an investigational drug laquinimod, or placebo (sugar pill) for 12 months. Laquinimod has already been investigated for the treatment of multiple sclerosis (MS) as it acts both on the immune system and within the central nervous system. It has been suggested that laquinimod may have an effect on the progression of HD. This trial is being conducted to determine if laquinimod helps with the signs and symptoms of HD including abnormal movements, memory problems and emotional disorders.
- IONIS – IONIS-HTTRx is an antisense drug in development for the treatment of HD. IONIS-HTTRx is designed to reduce the production of all forms of the huntingtin (HTT) protein, which in its mutated variant (mHTT) is responsible for HD. MCGM was selected as a site for the Phase 1 clinical trial which is now successfully completed and supports the development to an open –label extension study later in 2017.
- THE PRIDE_HD study – Open-Pride-HD (Teva Pharmaceuticals): This study is examining the effects of a drug called pridopidine on movement, thinking, and behaviour in HD. Participants are currently receiving a dose of pridopidine and continue to attend for 6 monthly visits to monitor their symptoms. This study has recently been extended for a further year.
The HD clinical team are currently involved in 2 separate studies of psychological interventions for HD, a mindfulness study and a Narrative study.
- Mindfulness: We have collaborated with researchers from Lancaster University on a project that aimed to look at the use of mindfulness therapy. So far there has been little research that has considered the role of psychological interventions in treating common symptoms of anxiety and depression in the HD population. Mindfulness involves focussing an individuals’ awareness on their emotions, physical sensations and thoughts that they are experiencing in that moment.
- Narrative: We have received funding from the European Huntington’s Disease Network (EHDN) to collaborate with researchers from Birkbeck, University College London, to explore patients’ experience of a narrative group session following predictive testing for HD. Narrative practices draws on individuals’ own resiliences and coping to make these more visible
