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Euro Huntington's disease network [logo]
Locations - U.K. - Study Site Manchester -

Public contact

For information or queries concerning European HD and other research projects, please contact Dawn Rogers on 0161 701 2540

About us

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The Manchester European HD centre is built on a collaboration between two groups:Genetic Medicine based at St. Mary’s Hospital in Manchester, and the Cerebral Function Unit (CFU) of the Greater Manchester Neuroscience Centre at Salford Royal. In addition to the HD management clinic, the Regional Genetic Service provides genetic counselling and a pioneering Genetic Family Register service for the North West region of England. We were one of the first centres in the UK to offer predictive genetic testing for HD, and played a major part in the development of national and international guidelines for predictive test counselling. 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. Patients are seen annually for a full assessment, with additional brief review appointments scheduled as and when necessary. The HD Regional Care Advisors are part of the clinic team, providing a link to community-based services and visiting families at home between appointments if problems arise.

Research Interests:

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Our research into HD has focussed mainly on the cognitive and behavioural aspects of the condition. We are involved in a number of collaborative projects with other European HD centres.
Current Research

  • European HD: REGISTRY
  • PREDICT HD: Neurobiological biomarkers for disease onset in HD
  • NEST-UK: striatal transplantation trial
  • PADDINGTON:
  • Cognitive Assessment Battery (CAB) Beta Study
  • Registry 3 Sub Study: Outcome Measures
Past Research
  • ACR16
  • Horizon
  • Horizon Plus
  • Social cognition and understanding of inference in HD
  • Psychiatric disorders in pre-symptomatic individuals at-risk of HD
  • Motor sequencing in HD

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 
  • Dawn Rogers: Research Assistant (Enroll-HD)
  • 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
  • Emma Oughton: NIHR Research Nurse
  • Phil Tinkler: NIHR Nurse
  • Judith Brooke: NIHR Research Nurse

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.

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.

Gene negative research clinic
We hold quarterly research clinics on a Saturday for patients that have received a favourable predictive test result and want to be involved in research.

Please look at our leaflets below for more information.

HD Multi-disciplinary Service Leaflet

HD Multi-disciplinary Clinic Leaflet

Huntington's Disease Spring 2016 newsletter

Huntington's Disease Open day 22nd October 2016