The National Hospital for Neurology and Neurosurgery
Ms Rachel Taylor
Nurse Consultant, Study Site Administrator The National Hospital for Neurology and Neurosurgery, Dept. of Neurogenetics (Box 12)
Postal address:
Queen Square WC1N 3BG London U.K.
phone:
+44 20 31087471
e-mail:
How to find us....
By bus: Southampton Row - Bus No's 59, 68, 91, 168, 188, 501 Theobalds Road - Bus No's 19, 38, 55, 243 High Holborn / New Oxford Street - Bus No's 8, 25, 242, 501, 521
By tube: Russell Square (Picadilly Line) Holborn (Central Line)
By train Euston or Kings Cross St Pancras are the nearest railway stations. For further information, please call National Rail Enquiries on 03457 48 49 50
By car There is no general parking, although there is limited disabled parking and a drop off facility.
Please note - Use public transport whenever possible. For further information about buses and tubes, please call Transport for London on 020 7222 1234 (24 hours) or visit their website, www.tfl.gov.uk
OUR TEAM Consultant Neurologists: Professor Sarah Tabrizi (Lead Clinician) Professor Tom Warner Dr Thomasin Andrews Dr Edward Wild Consultant Neuropsychiatrist: Dr Elvina Chu Consultant Clinical Geneticist: Dr Elisabeth Rosser Neurology Clinical Research Fellows: Dr Davina Hensman Dr Peter McColgan
Dr Mike Flower
Dr Rhia Ghosh
Dr Carolin Koriath Huntington’s Disease Association Regional Care Advisors Mandy Ledbury
Helen Santini
Anna Gardner
Alison Heavey Nurse Consultant Rachel Taylor
Nurse Specialist
Desiree Salanio Euro-HDREGISTRY coordinator Monica Lewis
Research Nurse
Stefanie Brown
Euro-HD REGISTRY research Assistant Nicola Robertson
Temi Ibitoye
PREDICT-HD Coordinator Maggie Burrows Medical Secretary Rosilyn Bullock
The Clinic
The specialist Huntington’s Disease Clinic at The National Hospital for Neurology and Neurosurgery in London was established in March 2003 in order to provide a co-ordinated, multidisciplinary approach to managing the care of people with or at risk of Huntington’s Disease and their families/carers. The clinic is led by Professor Sarah Tabrizi (Consultant Neurologist).
There are two clinics per month and approximately twenty to thirty patients are seen in each clinic. Referrals are received from across the south of England and beyond. A range of patients, from those who are at-risk of the disease to those who have symptoms. The clinic provides: •Pre-symptomatic genetic counselling and testing •Prenatal genetic counselling and testing •Management of neurological symptoms •Management of psychiatric symptoms •Psychosocial support for patients and their families/carers •Information about research and opportunities to take part in research where appropriate.
Our clinic has been awarded a UK Department of Health Good Clinical Practice award.
Appointments Clinic appointments vary, a new patient appointment with one of the Consultant Neurologists takes 25-60 minutes and a new patient appointment with the Neuropsychiatrist or Consultant Geneticist can take up to 1 hour. Patients may also need to see one of the Huntington’s Disease Association Care Advisors and/or the Genetic Nurse.
Patients may attend with a family member, friend, carer, social worker or community nurse.Patients should bring in with them information about any medication they are taking, their GP’s contact details and any changes to their contact details.Follow-up appointments are annually or more frequently if required.
There are a number of other services within this hospital that patients can be referred to. These include Speech and Language Therapy, Physiotherapy, Occupational Therapy and the Dietician. Referral to the Clinic Patients cannot refer themselves to the HD clinic; they are usually referred by General Practitioners and hospital specialists (usually neurologists, psychiatrists or clinical geneticists). Referrals should be addressed to: Professor Sarah Tabrizi, Huntington's Disease Multidisciplinary Clinic, Box 104 NationalHospital for Neurology and Neurosurgery, Queen Square, LondonWC1N 3BG.
Further information Further information about the clinic can be obtained from Rachel Taylor, HD Nurse Consultant on 020 310 87471.
Research
There are a number of major research studies taking place
within the Huntington’s Disease Clinic. One of the main research initiatives is
the identification of biomarkers of disease as an aid to tracking disease
progression, which is important for the development of therapeutics. We are also involved in running clinical drug trials and observational research projects.
Further information
More information about the specific research projects which are currently active can be found at www.hdresearch.ucl.ac.uk