National Prion Clinic at the National Hospital for Neurology and Neurosurgery

The National Prion Clinic (NPC) is based at the National Hospital for Neurology and Neurosurgery, Queen Square, London.

The NPC provides diagnosis and care for patients with, or suspected of having, any form of human prion disease. These remain very rare diseases, but it is possible that the numbers of people affected by variant CJD, the prion disease linked to BSE, may increase. The NPC is the national referral centre for prion disease, and works closely with the MRC Prion Unit, based at the Institute of Neurology, Queen Square, London. An extensive research programme is seeking to promote early diagnosis and develop treatments for this group of diseases. We have conducted the first clinical trial for prion disease in the UK. We are now launching the National Prion Monitoring Cohort study.

The National Prion Monitoring Cohort (NPMC) is an observational cohort study collecting longitudinal prospective data on all patients diagnosed with or at high risk of developing prion disease, regardless of whether or not they are receiving treatment. The study will monitor changes in clinical disease progression, neuropsychological rating scales and MRI during the natural history of the diseases or in response to therapeutic and other interventions. Patient may enroll by three strata: 1) symptomatic patients with confirmed prion disease, 2) asymptomatic individuals with confirmed pre-clinical prion infection or disease and 3) asymptomatic individuals without a confirmed diagnosis but at high risk due to known exposure. Please contact the clinic for further details (020 7692 2397).

The clinic staff comprise consultant neurologists Professor John Collinge, Simon Mead and Peter Rudge; Michele Gorham, a nurse consultant; Clare Morris a clinical counsellor, and mobile teams of junior doctors and clinical nurse specialists.

The service includes:

• Comprehensive investigation and assessment for all forms of the disease.
• Tonsil biopsy as a means of diagnosing variant CJD.
• Genetic testing (diagnostic and predictive) for inherited/familial prion disease.
• Information, advice, support and counselling for patients and their families, both during investigation, on diagnosis, and long term follow up. We aim to work closely with and provide information and support for professionals working with registered patients in their local area.
• General information and advice by telephone and email.
• Study days, family information days and training workshops.
• All information on this site can be sent by post on application.

Updated telephone numbers