UCL Institute of Neurology

Launch of ground-breaking research into prion disease

Patients are being recruited to a major new research programme which aims to develop improved ways of diagnosing and treating those suffering from fatal brain diseases, such as vCJD. The £3 million study, funded by the Department of Health, is led by Professor John Collinge (head of the IoN Department of Neurodegenerative Disease) and Dr Simon Mead from the National Prion Clinic based at the National Hospital for Neurology and Neurosurgery.

The project is being officially launched next Tuesday 24th March 2009 at the NHNN. They will closely study patients at all stages of the disease to try to develop improved ways of reaching an earlier diagnosis and to understand how best to monitor patients receiving new treatments in the future. Patients who have been diagnosed with, or are at high risk of developing, prion disease can enrol on the National Prion Monitoring Cohort.

Professor John Collinge said: “As prion diseases are quite rare, come in many forms, and can be very variable in how rapidly they progress, it can be difficult to tell if a particular drug has overall benefit. For this reason, it is very important to build up a detailed picture of the progression of the different forms of the diseases and to determine how useful various types of tests are to monitor patients.

The aim is to build up a very detailed understanding of disease progression that can then be used to compare with patients receiving new drugs in the future. “Learning how to make the diagnosis much earlier is important now, but will be increasingly important when we do have effective treatments as we will want to treat patients at the earliest possible stage, ideally before irreversible damage has occurred to the brain.”

read more >> UCLH Press Release | National Prion Clinic