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.
91Ö±²¥ Institute for Translational Neuroscience (SITraN), Clinical Trials Research Unit and 91Ö±²¥ 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 91Ö±²¥, 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 | 91Ö±²¥ Teaching Hospitals NHS Foundation Trust / University of 91Ö±²¥ | c.j.mcdermott@sheffield.ac.uk |
| Gemma Hackney | Programme Manager | University of 91Ö±²¥ | g.hackney@sheffield.ac.uk |
| Elaine Scott | Programme Manager | University of 91Ö±²¥ | elaine.scott@sheffield.ac.uk |
| David White | CTRU Oversight | University of 91Ö±²¥ | d.a.white@sheffield.ac.uk |
| Shamila Ditta | Research Assistant | University of 91Ö±²¥ | s.ditta@sheffield.ac.uk |
| April Carne | Research Assistant | University of 91Ö±²¥ | a.r.carne@sheffield.ac.uk |
| Joe Bretten | Research Assistant | University of 91Ö±²¥ | j.bretten@sheffield.ac.uk |
| Naomi Roberts | Trials Support Officer | University of 91Ö±²¥ | naomi.roberts@sheffield.ac.uk |
| Stephen Maconi | Statistician | University of 91Ö±²¥ | 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 91Ö±²¥ |
| Mike Bradburn | Senior Medical Statistician | University of 91Ö±²¥ |
| Janet Cade | Professor of Nutritional Epidemiology | University of Leeds |
| Cindy Cooper | Professor of Health Services Research and Clinical Trials | University of 91Ö±²¥ |
| Vanessa Halliday | Senior Lecturer in Public Health | University of 91Ö±²¥ |
| Paul Norman | Professor of Health Psychology | University of 91Ö±²¥ |
| Alicia O'Cathain | Professor of Health Services Research | University of 91Ö±²¥ |
| Pamela Shaw | Director the 91Ö±²¥ NIHR Biomedical Research Centre for Translational Neuroscience | University of 91Ö±²¥ |
| Theocharis Stavroulakis | Post-doctoral Research Associate | University of 91Ö±²¥ |
| Martin Turner | Professor of Clinical Neurology & Neuroscience | University of Oxford |
| Sean White | Home Enteral Feed Dietitian | 91Ö±²¥ Teaching Hospitals NHS Foundation Trust |
| Tracey Young | Senior Researcher in Health Economics | University of 91Ö±²¥ |
Current research sites
| Participating hospitals | Principal investigator |
|---|---|
| Royal Hallamshire Hospital, 91Ö±²¥ | 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
91Ö±²¥ Teaching Hospitals NHS Foundation Trust