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

About us

For the past 25 years our Medical Genetics Service for Wales has provided information, genetic counselling and testing and clinical support for individuals with Huntington's disease and their relatives.  We have now joined with colleagues from Neurology, Psychiatry and Neuropsychology to form a more broadly based service for South Wales families.  We are also a service that is actively involved in research.  A number of these research activities are in partnership with UK and European Huntington's disease networks.

Referrals to Clinic

Patients and relatives are referred by General Practitioners or Hospital Consultants to attend Professor Anne Rosser's HD clinic.

Clinics
Clinics for patients at risk of Huntington’s disease are held at the Institute of Medical Genetics, University Hospital of Wales, Cardiff.
The aim of the service is to provide information about the disease, discuss the choices available, and provide ongoing care and support to at risk patients and their families.
The clinic also provides presymptomatic genetic counselling and testing.
If concerned phone (029) 2074 2577.

Clinic Information and the HD team
The Management Clinic is held at the Clinical Research Facility, UHW, every Wednesday from 10am to 1pm. More information on HD, the clinical service and research activites can be found on the Cardiff HD centre website
Appointments
Any queries with an appointment, please contact Prof. Rosser's clinical secretary, Candace Farman, on 02920 688237.
It would be very helpful if patients could bring with them their current medication details and any change in contact/GP details.

The Cardiff HD team include:
Prof Anne Rosser (Consultant Neurologist)
Dr Thom Massey (Neurology Specialist Registrar)
Miss Rebecca Cousins (Research Nurse)
Mrs Catherine Clenaghan (HD Nurse Specialist)
Professor Monica Busse (Senior Lecturer and Physiotherapist)
Miss Candace Farman (Clinic Administrator)

The Institute of Medical Genetics, University Hospital of Wales

Research opportunites:
Cardiff hosts a number of research opportunities available to all those affected by or at risk of Huntington’s disease (HD). Currently, clinical research initiative
include:

   
  • ENROLL-HD: a global, observational trial aiming to accelerate the discovery and development of new therapeutics for HD. For up-to-date information on the trial, click here
  • NEW! CAPIT-HD2: Describes the REPAIR-HD Beta testing of a new assessment protocol for assessment of complex therapies in HD.
  • REPAIR-HD: A study to establish all preclinical requirements for transplantation of stem cell-derived neurons in HD in order to replace those lost to the disease process

We also participate in commercial clinical trials. Our current ongoing trials include:

  • OPEN PRIDE-HD - A Multi-Centre, Open Label study Evaluating the Safety. Tolerability and Efficacy of Pridopidine in Patients with Huntington's Disease (Open PRIDE-HD)

Our previous commercial trial involvement is documented as follows:

  • PRIDE-HD - A Phase 2, Dose-Finding, Randomized, Parallel-Group, Double-Blind, Placebo-Controlled Study, Evaluating the Safety and Efficacy of Pridopidine 45 mg, 67.5 mg, 90 mg, and112.5 mg Twice-Daily versus Placebo for Symptomatic Treatment in Patients with Huntington’s Disease.               The purpose of this study is to see what effect pridopidine has on movement, thinking, and behaviour, compared to placebo (a capsule that looks like pridopidine but has no active ingredient), in people with Huntington’s Disease.

  • Amaryllis Study (A8241021) - A Randomized, Placebo Controlled Study of the Efficacy And Safety Of PF-02545920 In Subjects with Huntington's Disease

  • OLE Amaryllis Study - An Open Label Extension Study To Investigate The Long Term Safety, Tolerability And Efficacy Of Pf-02545920 In Subjects With Huntington's Disease Who Previously Completed Study A8241021


The Brain Repair Group (BRG): Led by Profs Steve Dunnett and Anne Rosser at Cardiff University, the BRG focuses on research into neurodegeneration, repair and neuroprotection in disease models of Huntington’s and Parkinson’s. Research activities strive to develop and improve strategies of regeneration in an attempt to provide therapy for these presently incurable diseases. Approaches currently under investigation include:
  • Models of disease
  • Neural transplantation
  • Alternative cells for therapy
  • Neuroprotection
The Huntington’s Disease Research Group, Cardiff University: Led by Dr Lesley Jones, the HD Research Group carries out close analysis of the interactions that the mutated gene is involved in, which permits a better understanding of exactly how the genetic mutation causes the cascade of damaging events. Further interests include the influence of genetic modifiers on the clinical presentation of the disease and monitoring gene expression before and after treatments.


 

University of Wales Hospital

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How to find us..

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Map to Heath Hospital. ClicK here to view larger image.magnifier
By Car
From the M4 (East)
Follow the M4 into Wales, over the Severn bridge. At junction 29, (A48) leave the Motorway.
Follow A48 until the fifth junction, this should be a dedicated slip road onto the University Hospital of Wales site.
From the M4 (West) and A470 (North)
Follow M4 (from West) / A470 (from North) until the M4/A470 interchange at Coryton. Follow road signs marked Cardiff City Centre along dual carriageway for approx two miles until you reach a large roundabout.
At the roundabout, stay in the left hand lane and aim for the A48 Newport (the Hospital will be signposted here). The entrance onto the hospital site is found on the slip road to the A48.
By Bus
Cardiff Bus                                             
1, 1a, 2, 2a (City Circle)                   
8, 8a, 9, 9a (Cardiff Bay Area)           
86 (Lisvane) and 87 (Llanishen)           

Travel Coaches
98 and 99

Stagecoach Service
A and B (Caerphilly)

Bebb                                                        
22 (Rhiwbina) 

Shamrock                                
304 (Barry) and L3 (Llandough)