OptiCALS

Evaluating a nutritional management intervention for people with Amyotrophic Lateral Sclerosis (ALS).

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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, СŷÊÓƵ of Sheffield, in collaboration with colleagues from ScHARR, СŷÊÓƵ of Leeds, СŷÊÓƵ 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 / СŷÊÓƵ of Sheffield c.j.mcdermott@sheffield.ac.uk
Gemma Hackney Programme Manager СŷÊÓƵ of Sheffield g.hackney@sheffield.ac.uk
Elaine Scott Programme Manager СŷÊÓƵ of Sheffield elaine.scott@sheffield.ac.uk
David White CTRU Oversight СŷÊÓƵ of Sheffield d.a.white@sheffield.ac.uk
Shamila Ditta Research Assistant СŷÊÓƵ of Sheffield s.ditta@sheffield.ac.uk
Jonathan Woodward Research Assistant СŷÊÓƵ of Sheffield Jonathan.Woodward@sheffield.ac.uk
April Carne Research Assistant СŷÊÓƵ of Sheffield a.r.carne@sheffield.ac.uk
Joe Bretten Research Assistant СŷÊÓƵ of Sheffield j.bretten@sheffield.ac.uk
Naomi Roberts Trials Support Officer СŷÊÓƵ of Sheffield naomi.roberts@sheffield.ac.uk
Stephen Maconi Statistician СŷÊÓƵ 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 СŷÊÓƵ of Sheffield
Mike Bradburn Senior Medical Statistician СŷÊÓƵ of Sheffield
Janet Cade Professor of Nutritional Epidemiology СŷÊÓƵ of Leeds
Cindy Cooper Professor of Health Services Research and Clinical Trials

СŷÊÓƵ of Sheffield

Vanessa Halliday Senior Lecturer in Public Health СŷÊÓƵ of Sheffield
Paul Norman Professor of Health Psychology СŷÊÓƵ of Sheffield
Alicia O'Cathain Professor of Health Services Research СŷÊÓƵ of Sheffield
Pamela Shaw Director the Sheffield NIHR Biomedical Research Centre for Translational Neuroscience СŷÊÓƵ of Sheffield
Theocharis Stavroulakis Post-doctoral Research Associate СŷÊÓƵ of Sheffield
Martin Turner Professor of Clinical Neurology & Neuroscience СŷÊÓƵ of Oxford
Sean White Home Enteral Feed Dietitian Sheffield Teaching Hospitals NHS Foundation Trust
Tracey Young Senior Researcher in Health Economics СŷÊÓƵ of Sheffield

Current research sites

Participating hospitals Principal investigator
Royal Hallamshire Hospital, Sheffield Prof Chris McDermott
Middlesbrough MND Care Centre, James Cook СŷÊÓƵ 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 СŷÊÓƵ 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 СŷÊÓƵ Health Board  Joe Annandale
Royal Bournemouth Hospital Annemieke Fox

Sponsor

Sheffield Teaching Hospitals NHS Foundation Trust

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