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
National Hospital for Neurology and Neurosurgery,
London WC1N 3BG.
Further information about the clinic can be obtained from Rachel Taylor,
HD Nurse Consultant on 020 7837 3611 ext 4176.
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.
The most recent project is Track HD for which Professor Sarah Tabrizi is the lead investigator worldwide.
The team are involved in the following studies:Euro-HD REGISTRY
A database of all HD patients throughout Europe
A comprehensive study of premainfest and early HD, which will define the best combination of assessments to be used in clinical trials of disease-modifying treatments.PREDICT-HD
Identification of neurobiological markers for disease onset in HD.Biomarkers in Blood
Neurobiological markers for disease onset in HDNeuroendocrine HD
Examining hormones and metabolic factors in pre-symptomatic and moderate disease patients with the aim of identifying biomarkers of the disease.
More information on HD, the clinical service and contact details for all of the above studies can be found at www.hdresearch.ucl.ac.uk