The Sheffield MND Care and Research Centre is the host centre leading the UK Dementia and Neurodegenerative Diseases (DeNDRoN) Clinical Studies Group for MND clinical trials.
Professor Pam Shaw and her clinical team have already played a key role in multiple national, European and international trials of potential neuroprotective agents. So far, riluzole is the only therapy shown to have a neuroprotective effect. The Sheffield team acted as ‘champions for patients’ by negotiating with UK Health Care providers to include this therapy in the NICE treatment guidelines and make it available to MND patients in the UK.
Find out about our latest collaboration with UK and European partners to investigate the potential of Interleukin-2 in Motor Neuron Disease. News: Ambitious Research project trials promising new therapy for MND.
In the absence of better neuroprotective therapies, the SITraN research team recognises the importance of improving symptomatic care and quality of life for MND patients. Professor Shaw’s team was fundamental in providing the evidence for the effectiveness of non-invasive ventilation (NIV) to support breathing in MND patients with respiratory muscle weakness. This has resulted in a new NICE treatment guideline to make NIV generally available for MND patients in the UK, with significant impact on survival and quality of life of
patients with MND.
There are further aspects of symptomatic treatment for which high quality clinical research is needed to provide the evidence to bring such therapies into clinical practice and make them widely available to MND patients. New multicentre trials led from SITraN include the evaluation of new technologies such as diaphragm muscle pacing, cough assist devices, new methods for nutritional management and other assistive technologies.
We are also currently assessing the potential value of measuring changes in muscle volume by whole-body magnetic resonance imaging (MRI) in diagnosing MND and monitoring clinical progression.
Working together with our Sheffield MND Research Advisory Group, the Sheffield team is developing new assistive technologies to meet the specific needs of MND patients. Most recently, Dr Chris McDermott has led the development of a customisable head support collar for individuals with neck muscle weakness (Head-Up), a telehealth system (TiM) to revolutionise access to specialist care for MND patients, as well as a web resource for the use of non-invasive ventilation (NIV). These technologies are all currently being trialled by MND patients.
As yet, no definite risk factors have emerged for MND. Strikingly, well known sportsmen have developed MND implying that a high level of physical activity could play a role in MND, probably coupled with a genetic predisposition. SITraN has recently undertaken a study in collaboration with Professor Carol Brayne, Director of Public Health at the University of Cambridge, and Professor Nick Wareham of the MRC Epidemiology Unit in Cambridge to establish whether a high level of physical exercise is a definite environmental risk factor for MND.
The Sheffield MND Care and Research Centre importantly provides the crucial resources that underpin all our research programmes
and put the Sheffield team in a unique position to make a major
contribution to the search for causes and curative treatments for MND:
The Sheffield MND resources will be invaluable for defining further genetic factors predisposing to MND and for elucidating the interaction between genes and environmental factors. These resources are made available to our collaborators worldwide and have contributed to major discoveries such as the recent discovery of a new gene, TUB4A, associated with MND.