Huntington’s Disease (HD) is a progressive neurological disorder with onset of symptoms typically developing in adulthood. Although the symptoms experienced tend to differ from one person to the next, they characteristically include involuntary movements, cognitive decline and behavioural problems. HD is also an autosomal dominant genetic disorder, which means that each person who has a parent with HD has a 50% chance of inheriting the disease themselves.
Although there is currently no cure for HD, there are many ways to help manage the symptoms, which is where our multi-disciplinary team can help. Medication can be used to help treat symptoms such as involuntary movements and mood changes; occupational therapists can help with patients managing their daily living; speech and language therapists can help with improving any difficulties with speech and swallowing and the dietitian can provide advice about preventing weight loss with a high calorie diet.
Who to contact...
The multi-disciplinary HD team at the Birmingham site include:
Consultant Neuropsychiatrist: Dr Hugh Rickards
Occupational Therapists: Louise Oakley
Speech & Language Therapist: Amy Dalton
Dietitian: Judith Munn
Researchers: Kerry Gibson (Physiotherapist Research Fellow)
Dr Clare Eddy (Senior Research Fellow) Dr Jenny De Souza
(Senior Research Fellow)
Ellice Parkinson (Research Fellow)
Jan Wright (Research Nurse)
HD Regional Care Advisor: Poppy Hill
Secretary: Tina Lewis
For more information about about the Enroll-HD study and other HD research in Birmingham, please contact Ellice Parkinson on 0121 301 4337.
Ongoing Research Projects: Euro-HD REGISTRY
– pilot Birmingham has been an active contributing site to REGISTRY since November 2005.
Upcoming and active research projects:
Lymphocyte study in HD
– pilot study investigating the lymphocyte profiles of people with HD (pre-manifest and manifest) compared to controls.Validation of the AMPS in HD
– the assessment of motor and processing skills is an occupational therapy tool used to assess functional skills. The study aims to validate this tool in the HD population.Imaging in social cognition tasks
– the study aims to find out more about reasoning processes in HD, and to investigate possible changes in brain activity in HD using functional MRI techniques. People in different stages of HD and those without the gene expansion will be asked to take part.
Recently Completed Research Projects:
ACR-16 clinical trial
– Birmingham is involved in recruiting people to this randomised, double-blind, placebo-controlled trial of ACR-16, a dopaminergic stabiliser that has the ability to stabilise behavioural and motor disturbances without compromising normal thought processes or motor function.The familiality of psychiatric symptoms in HD
– 100 sibling pairs affected with HD and any willing unaffected siblings who have had a negative genetic test will be recruited to this study from HD clinics throughout the UK
This is a phase III trial of dimebon which is thought to enhance mitochondrial function in neurodegenerative disorders.Nabilone Treatment Trial
– 44 HD patients were recruited to take part in a pilot study investigating the use of nabilone in the symptomatic treatment of HD. Data on this trial are now published (Curtis et al. Movement Disorders 2009. 24(5):2254-2259).Validation of depression rating scales
– 50 patients were recruited to participate in a study to determine the validity of self-report depression rating scales in assessing depression presence and absence in HD. (Keylock et al. Movement Disorders 2009 in Press).Ethyl-EPA treatment trial
was one of the sites involved in the multi-centre, double-blind, placebo-controlled treatment trial of Ethyl-EPA.