OptiCALS
Evaluating a nutritional management intervention for people with Amyotrophic Lateral Sclerosis (ALS).
Background
Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND), is a devastating, life-shortening illness which affects about 5000 people in the UK at any one time. As the disease progresses, patients experience weakness of limb muscles, difficulties with chewing and swallowing, and weakness of the main breathing muscles.
Sheffield Institute for Translational Neuroscience (SITraN), Clinical Trials Research Unit and Sheffield Centre for Health and Related Research (SCHARR) staff were awarded a six-year programme grant from the National Institute for Health Research to investigate the nutritional management of people living with ALS. The HighCALS research programme is led by Chris McDermott, Professor of Translational Neurology, University of Sheffield, in collaboration with colleagues from ScHARR, University of Leeds, University of Oxford and King’s College, London.
People with ALS (pwALS) often lose weight due to raised energy requirements and symptoms of the disease making it difficult to eat. Little is currently known regarding how food intake affects ALS and there is a lack of guidance for patients and healthcare professionals on weight and nutrition.
Underpinning HighCALS is a programme of work designed to understand the current national service models, the beliefs of stakeholders and the development of behaviour change strategies to support and improve nutritional interventions.
OptiCALS randomised controlled trial
We are now in the final phase of the programme, trialling the OptiCALS nutritional intervention to investigate whether the OptiCALS intervention can slow ALS progression, improving physical function and quality of life in people with ALS (pwALS). We believe addressing this potentially simple issue could have a dramatic impact on survival, function, and quality of life for the 6000 people living with ALS in the UK.
The OptiCALS trial is seeking to recruit 259 participants from clinical sites across the UK. If you would like further information, please contact Opticals@sheffield.ac.uk or our trial managers, Elaine Scott and Gemma Hackney.
Central study staff
| Name | Role | Organisation | Contact |
|---|---|---|---|
| Professor Christopher McDermott | Chief Investigator | Sheffield Teaching Hospitals NHS Foundation Trust / University of Sheffield | c.j.mcdermott@sheffield.ac.uk |
| Gemma Hackney | Programme Manager | University of Sheffield | g.hackney@sheffield.ac.uk |
| Elaine Scott | Programme Manager | University of Sheffield | elaine.scott@sheffield.ac.uk |
| David White | CTRU Oversight | University of Sheffield | d.a.white@sheffield.ac.uk |
| Shamila Ditta | Research Assistant | University of Sheffield | s.ditta@sheffield.ac.uk |
| April Carne | Research Assistant | University of Sheffield | a.r.carne@sheffield.ac.uk |
| Joe Bretten | Research Assistant | University of Sheffield | j.bretten@sheffield.ac.uk |
| Naomi Roberts | Trials Support Officer | University of Sheffield | naomi.roberts@sheffield.ac.uk |
| Stephen Maconi | Statistician | University of Sheffield | s.v.maconi@sheffield.ac.uk |
Collaborators
| Name | Role | Organisation |
|---|---|---|
| Ammar Al-Chalabi | Professor of Neurology and Complex Disease Genetics | King's College London |
| Wendy Baird | Professor of Health Services Research | University of Sheffield |
| Mike Bradburn | Senior Medical Statistician | University of Sheffield |
| Janet Cade | Professor of Nutritional Epidemiology | University of Leeds |
| Cindy Cooper | Professor of Health Services Research and Clinical Trials | University of Sheffield |
| Vanessa Halliday | Senior Lecturer in Public Health | University of Sheffield |
| Paul Norman | Professor of Health Psychology | University of Sheffield |
| Alicia O'Cathain | Professor of Health Services Research | University of Sheffield |
| Pamela Shaw | Director the Sheffield NIHR Biomedical Research Centre for Translational Neuroscience | University of Sheffield |
| Theocharis Stavroulakis | Post-doctoral Research Associate | University of Sheffield |
| Martin Turner | Professor of Clinical Neurology & Neuroscience | University of Oxford |
| Sean White | Home Enteral Feed Dietitian | Sheffield Teaching Hospitals NHS Foundation Trust |
| Tracey Young | Senior Researcher in Health Economics | University of Sheffield |
Current research sites
| Participating hospitals | Principal investigator |
|---|---|
| Royal Hallamshire Hospital, Sheffield | Prof Chris McDermott |
| Middlesbrough MND Care Centre, James Cook University Hospital | Anthony Hanratty |
| John Radcliffe Hospital, Oxford | Prof Martin Turner |
| Derriford Hospital, Plymouth | Prof Oliver Hanemann |
| Ninewells Hospital, Dundee | Dr Ian Morrison |
| Neurological Rehabilitation Unit, Walton Hospital, Liverpool | Prof Carolyn Young |
| King's College Hospital, London | Prof Ammar Al-Chalabi |
| Dorothy House Hospice, Bath | Dr Edward Presswood |
| LOROS Hospice, Leicester | Prof Christina Faull |
| Greater Manchester Centre for Clinical Neurosciences, Salford | Christina Federico |
| North Midlands MND Care & Research Network, Royal Stoke University Hospital | Dr Thomas Lambert |
| Morriston Hospital, Swansea | Dr Idris Baker |
| National Hospital London NMD centre (UCLH) London | |
| Hounslow and Richmond Community Healthcare NHS Trust | Adreia Ture / Dr Andrea Forero Ozer |
| Preston MND Care and Research Centre, Royal Preston Hospital | Prof Suresh Chhteri |
| Royal United Hospitals, Bath | Dr Gurjit Chohan |
| Beaumont Hospital, Dublin | Orla Hardiman |
| Hywel Dda University Health Board | Joe Annandale |
| Royal Bournemouth Hospital | Annemieke Fox |
Sponsor
Sheffield Teaching Hospitals NHS Foundation Trust