For information or queries concerning research projects relating to HD, please contact Dawn Rogers on 0161 701 2540 or Zara Skitt and Siofra Peeren on 0161 701 2540.
Our research into HD includes the cognitive and behavioural
aspects of the condition, as well as long term observational studies and
exploratory clinical trials. We are involved in a number of collaborative
projects with other European HD centres.
Clinical trial research is carried out at the The NIHR Clinical Research
Facility, adjacent to the MRI in Manchester.
Summary of current and ongoing projects:
This is a global observational study, collecting clinical data to help
better understand Huntington's disease. We carry out Enroll-HD assessments
alongside most of our clinics.
Pharmaceutical Trials -
We are actively recruiting people for pharmaceutical
trials including Legato-HD (Teva Pharmaceuticals) and the Ionis trial (Ionis pharmaceuticals). Manchester is delighted to be one of three sites in the UK that will be taking part in the Ionis trial. The study will look at the safety and tolerability of a drug called 'ISIS-CS1-443139' which aims to lower huntingtin levels in HD patients. The study involves the drug delivering the drug intrethecally through a lumbar puncture. This delivers the drug into the cerebrospinal fluid which circulates throughout the brain, the aim of this being to directly target the toxic effects of huntingtin within the brain. We screen everyone who attends our clinics for the HD trials and contact patients who meet the eligibility criteria.
We have now completed recruitment for the Pride-HD (Teva Pharmaceuticals) and Amaryllis (Pfizer) trials and many patients that took part have continued participating in the open label extensions of these trials. Each
study is examining the effects of a different drug and look at the safety and tolerability of the drug and also measures any effects on movement,
thinking, and behaviour, compared to placebo.
Ø Collaborative studies
– We take part in
a number of collaborative studies with other sites within the network, for
example Engage-HD, which was recently completed and was investigating the effects of a physical activity
programme on people over a 6 month period.
Ø Local studies –
mining and analysis of information from the Registry, Enroll, and Track-HD studies
study that uses PET imaging to look at brain changes in presymptomatic people who
have changes in their mood. This study has completed recruitment and the investigators are in the process of analysing the results.
oA PET study designed to examine how the central nervous system (CNS) control over the swallowing process might be disturbed in early stage HD patients with mild dysphagia using a comprehensive, multimodal approach that combines well-establised swallowing assessments with functional imaging.
oA pilot study looking at the use of Mindfulness Cognitive Behavioural therapy to alleviate psychological distress in pre-manifest and early stage HD patients. We are recruiting patients that are experiencing anxiety and depression amongst other common psychiatric symptoms of HD.
Ø Tool development and training – We are actively
involved in the development of assessment tools and staff training across the
network. Sometimes we ask people if they are happy to be filmed whilst being
interviewed in the clinic. This helps us to train other clinicians and
researchers to carry out assessments in the same way.
Appointments for the HD Management Clinic are held in Clinic Suite E, Outpatients department, Manchester Royal Informary.
Appointments for Genetic Counselling and the Predictive Test Follow up clinic are held at the Manchester Centre for Genomic Medicine, 6th Floor, St Marys Hospital.
The hospital site is based on Oxford Road. Oxford Road Railway station is approximately one mile away and can be reached easily by bus. A map and detailed instructions on how to get to the hospital are found below.
Main contact details:
Manchester Centre for Genomic Medicine
6th Floor, St Mary’s Hospital
Tel: 0161 276 6510
Fax: 0161 276 6145
How to find us...