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Locations - U.K. - Study Site Manchester -

Public contact

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.

About us

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Our team is based in the Manchester Centre for Genomic Medicine at St. Mary’s Hospital, where the Regional Genetic Service provides genetic counselling and a Genetic Family Register service for the North West region of England. The HD management clinic is located in the out-patient department of Manchester Royal Infirmary, on the Central Manchester Hospitals site. The clinic is held every Monday afternoon, and staffed by a multi-disciplinary team of experienced clinical and research personnel. We also hold monthly clinics for pre-manifest and 'at risk' patients in the Genetics Department. Patients are seen annually for a full assessment, with additional brief review appointments scheduled as and when necessary. In addition to this we have recently started weekend research clinics to give gene negative patients the opportunity to participate in the Enroll-HD study. The Huntington's Disease Association (HDA) Specialist HD Advisors are part of the clinic team, providing a link to community-based services and visiting families at home between appointments if problems arise. We are actively involved in numerous clinical research studies, and invite people who attend our clinics to take part if they wish.

Research Interests:

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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:

Ø  Enroll-HD – 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. 

Ø  Clinical 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 – Examples include:
o    Data mining and analysis of information from the Registry, Enroll, and Track-HD studies
o    A 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.

Location

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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
Oxford Road
Manchester
M13 9WL
Tel: 0161 276 6510
Fax: 0161 276 6145

How to find us...

Detailed travel information and maps for Manchester Royal Infirmary and St Mary’s Hospital can be found at:

www.cmft.nhs.uk/saint-marys/plan-your-visit/map-and-directions.aspx

Map of Central Manchester University Hospitals

Directions to Central Manchester University Hospitals

 

The Multi-disciplinary Clinic team at Manchester includes:

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  • Dr David Craufurd: Consultant Neuropsychiatrist
  • Dr Liz Howard: Consultant Clinical Geneticist
  • Dr Rhona MacLeod: Consultant Genetic Counsellor
  • Dr Iris Trender-Gerhard: Consultant Neurologist
  • Alison Clarke : Prinicipal Genetic Counsellor
  • William Beckett: Genetic Counsellor
  • Isobel Atkinson: Secretary
  • Dr Cheryl Stopford: Neuropsychologist / Researcher
  • Dawn Rogers: Research Assistant (Enroll-HD coordinator) 
  • Siofra Peeren: Research Assistant (Amaryllis-HD)
  • Zara Skitt: Research Assistant (Pride-HD)
  • Debbie Robinson: Regional Care Advisor (Greater Manchester), HDA
  • Theresa Westhead: Regional Care Advisor (Lancashire), HDA
  • Diane Lyes: Regional Care Advisor (North Wales), HDA
  • Alwena Potter: Regional Care Advisor (North Wales ), HDA
  • Dr Jennifer Thompson: Neuropsychologist
  • Emma Oughton: NIHR Research Nurse
  • Phil Tinkler: NIHR Research Practitioner
  • Judith Brooke: NIHR Research Nurse
  • Kiera Andrews: NIHR Research Practitioner

HD services and clinics

The Manchester HD Multi-disciplinary team is focused on providing the best possible care for people who have or are at risk of developing Huntington's Disease, their families and carers.

We run several different services in order to meet these needs and have recently obtained funding to host an HD open day at the Manchester Town Hall on Saturday 22nd October 2016 for anyone from a HD family. Please see below for further details in the attached flyer for the event.

Genetic Counselling and testing
Family members at risk of HD who would like more information, support or to discuss issues such as genetic testing can be refered to one of our genetic counsellors via their GP.

Predictive test follow-up clinic
Individuals who are gene positive, but who are not yet showing symptoms of HD are invited once a year to a follow-up clinic. Here we can offer support, information and medical check ups.

HD management clinic
This clinic provides a service for patients with symptoms of HD, their families and carers. Here we can provide advice on the treatment and management of symptoms, access to benefits, respite and specialist care and also information about participation in research.

Please look at our newsletters and leaflets below for more information on our clinics and research updates.

HD Multi-disciplinary Service Leaflet

HD Multi-disciplinary Clinic Leaflet

Huntington's Disease Spring 2016 newsletter

Huntington's Disease Open day 22nd October 2016