The Royal Hallamshire Hospital Glossop Road Sheffield South Yorkshire S10 2JF Switchboard: +44 (0)114 2711900 To speak to our HD Research Coordinator, call Anya Kholkina on: 0114 305 3726
The Royal Hallamshire Hospital is situated a mile from the city on the Trust's central campus. Nearly 4,500 staff work at the Royal Hallamshire in a wide variety of clinical and non-clinical roles. For more information about the Royal Hallamshire Hospital and how to get there click here.
Nature of service: A multidisciplinary HD clinic was established at the Royal Hallamshire Hospital, Sheffield, UK in 2002. The main aim of this clinic is to improve the care of HD in South Yorkshire by bringing together the expertise of different specialists. The clinic was set up by Dr Oliver Bandmann (Consultant Neurologist) and Dr Oliver Quarrell (Consultant in Clinical Genetics). We are now fortunate enough to have a DeNDRoN research nurse, and a genetics nurse as well as established links with Neuropsychology and Liaison Psychiatry (Dr Paul Gill).
Clinic Times: The multidisciplinary HD clinic runs on Tuesday Afternoons twice a month.
Patients should be referred to this clinic by their GP or a specialist. The referral should be sent to:
Dr. Oliver Bandmann The Royal Hallamshire Hospital Glossop Road S10 2JF
For enquiries about hospital appointments, please contact Dr Bandmann’s secretary Kate Lovatt-Clark (0114 2713005)
In addition to the symptomatic clinic at the Royal Hallamshire Hospital, the clinical genetics service offers home visits by genetic counsellors and clinic appointments at the Sheffield Children’s Hospital and the District General Hospitals in Barnsley, Doncaster, Worksop (Bassetlaw) Chesterfield, Rotherham and Grimsby. We see families for the following reasons:
Following a new diagnosis in a family
Concerns about being at risk for HD
Pre-implantation genetic diagnosis (PGD) for HD as part of a satellite service of Guy’s Hospital.
Huntington’s disease research in Sheffield:
1. The ENROLL-HD Study; RECRUITING
We are participating in the ENROLL-HD study. This is a global observational study, collecting clinical data to help better understand Huntington's Disease. It will monitor how the disease appears and changes over time in different people. The study is open to people who either have HD or are at-risk.
The ENROLL-HD study clinics are currently run on Tuesday afternoons at the Clinical Research Facility (O-Floor) of teh Royal Hallamshire Hospital. Families who would like to participate in ENROLL can also be seen at the OPD2, Northern General Hospital in Sheffield and at the District General Hospitals in Grimsby, Chesterfield, and Scunthorpe. We are currently setting up clinics at the District General Hospitals in Barnsley, Doncaster, Bassetlaw, and Rotherham.
If you would like to participate in the ENROLL-HD study or would like any further information, please contact:
Anya Kholkina Clinical Research Coordinator Sheffield Clinical Genetics Service OPD2, Northern General Hospital Herries Road Drive Sheffield S5 7AU tel: 0114 305 3726 fax: 0114 273 7467 email:
2. Drug Trials We have currently completed five trials and recruiting to a sixth trial. We are actively recruiting participants for Amaryllis-HD (Pfizer) trial. Everyone who attends our Genetics and Research clinics will be screened for eligibility to take part in the pharmaceutical trials.You will be informed accordingly as more trials become available.
3. Juvenile Huntington’s Disease Dr Quarrell is lead facilitator for the Juvenile Huntington’s Disease Working Group of the European HD Network. The projects being developed include:
Developing new rating scales: Only a few patients with HD have very early onset but the current rating scales used in drug trials are not suitable for those with this form of the condition. Currently, there is no medication to slow down the disease process. We want to use this time to develop appropriate rating scales so that young people can be included in future studies of such treatments.
We are currently running a project looking at Services for Juvenile Huntington's Disease. We are taking a mixed method approach and are currently coming to the end of the first phase of the project. This phase has been focused on interviewing the families of young people living with JHD, as well as some young people themselves from across the UK. We have discussed with them which services they are currently accessing, where the deficit in care management is, and how they would feel about attending a virtual MDT set up through secure telecommunications technology. We are almost a third of the way through the project and we hope that by the end we will be able to better understand the needs of our patients and their families, and to have developed a more efficient way of developing this care management system.
We have summarised information on juvenile HD in a book called ‘Juvenile Huntington’s Disease and other trinucleotide repeat disorders’, published by Oxford University Press 2009.
There are no guidelines available for the management of juvenile HD so we are conducting a survey of the medications currently used to help manage these young patients.
4. Information for families Dr Quarrell published a second edition of ‘Huntington’s Disease – the facts’. published by Oxford University Press 2008. This book contains information about HD for families and carers. The new edition contains quotes from families and professionals to supplement the information about HD. For more information please go the HDA website.