Logo for HighCALS Research Programme

HighCALS: A programme to develop and evaluate a complex intervention to improve nutritional management for people with Amyotrophic Lateral Sclerosis (ALS)

SITraN, CTRU and ScHARR staff have been awarded a six-year programme grant from the NIHR (National Institute for Health Research) Programme Grants for Applied Research, focused on the nutritional management of people living with ALS (also known as Motor Neurone Disease).

The research programme is led by Christopher McDermott, Professor of Translational Neurology, University of Sheffield, in collaboration with a number of colleagues including those from ScHARR, University of Leeds, University of Oxford and King’s College, London.

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. We will then conduct an effectiveness and cost effectiveness study to investigate whether the HighCALS intervention, can prolong 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 with ALS (pwALS) in the UK.

The programme is divided into a number of work packages outlined below:

Work package 1:
To understand current nutritional management in UK health services for pwALS and inform the design of a HighCALS intervention so that implementation of HighCALS can occur within the wider NHS.

Work package 2:
Understand the beliefs, enablers and barriers to meeting the nutritional requirements of pwALS.

Work package 3:
Develop a nutritional support framework (HighCALS) for pwALS, their carers and healthcare professionals that overcomes the barriers and optimises the enablers to meet the nutritional requirements of pwALS.

Work package 4:
Evaluate the effectiveness and cost-effectiveness of intervening with a complex nutritional intervention (HighCALS) versus standard dietary management in improving outcomes in pwALS.

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
Dan Beever Programme Manager University of Sheffield d.a.beever@sheffield.ac.uk
David White CTRU Oversight University of Sheffield d.a.white@sheffield.ac.uk
Gemma Hackney Research Assistant University of Sheffield g.hackney@sheffield.ac.uk
Sarah Gonzalez Trials Support Officer University of Sheffield

Co-applicants

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
Lizzie Coates Qualitative Researcher University of Sheffield
Cindy Cooper Professor of Health Services Research and Clinical Trials

University of Sheffield

Julie Drakeley Patient and Public Involvement Representative

Sheffield Motor Neurone Disease Research Advisory Group

Vanessa Halliday Senior Lecturer in Public Health University of Sheffield
Gillian Marsden Deputy Operations Director Head & Neck Care Group Sheffield Teaching Hospitals NHS Foundation Trust
Paul Norman Professor of Health Psychology 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
David White Research Fellow University of Sheffield
Sean White Home Enteral Feed Dietitian Sheffield Teaching Hospitals NHS Foundation Trust
Tracey Young Senior Researcher in Health Economics University of Sheffield