About the decision aids

Development of these decision aids

These decision aids were developed by a study team from the Universities of Sheffield and Leeds. These decision aids are based on our research into how people make decisions about genetic testing for MND. Our study steering group included family members with lived experience of MND, health professionals, and people from the MND Association. We wish to thank everyone who has advised our study and taken part in our research.

The Study Team

  • Alisdair McNeill - Consultant in Clinical Genetics at Sheffield Children's Hospital and Senior
  • Clinical Lecturer in Neurogenetics at University of Sheffield
  • Hilary Bekker - Professor of Medical Decision Making at University of Leeds
  • Chris McDermott - Consultant Neurologist at Sheffield Teaching Hospitals and Professor of
  • Translational Neurology at University of Sheffield
  • Jade Howard - Postdoctoral Researcher at University of Sheffield

The steering group

  • Jennie Starkey - Expert by experience
  • Christine Hoskin - Expert by experience
  • Calum Kendal - Expert by experience
  • Jennifer Beford - Head of Partnerships, Education and Information at the MND Association
  • Angela Genge - Executive Director of the Clinical Research Unit and Director of the ALS
  • Global Centre of Excellence, Montreal Neurological Institute; Chief medical officer, QurAlis
  • Kristiana Salmon - MND research & independent consultant; previously, academic research
  • focused on genetic counselling and testing access and clinical practice in Canada
  • Martin Turner - Professor of Clinical Neurology & Neuroscience at Oxford University and
  • Consultant Neurologist at the John Radcliffe Hospital

Project funding

This research was funded by the Motor Neurone Disease Association (2022-2025).

Studies carried out to inform the decision aids

Howard J, Bekker HL, McDermott CJ, McNeill A. A report of resources used by clinicians in the UK to support motor neuron disease genomic testing. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. 2024 Apr 2;25(3-4):410-2.

Howard J, Bekker HL, McDermott CJ, McNeill A. Survey of service needs to embed genome sequencing for motor neuron disease in neurology in the English National Health Service. Journal of Medical Genetics. 2024 Jul 1;61(7):661-5.

Howard J, Bekker HL, McDermott CJ, McNeill A. Exploring the needs and preferences of people with amyotrophic lateral sclerosis (ALS) when making genomic testing decisions: an interview study. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. 2025 Feb 27:1-8.

Howard J, Bekker HL, McDermott CJ, McNeill A. Predictive genetic testing in amyotrophic lateral sclerosis (ALS): experiences of decision-making within UK genetic counselling services [under review].

Referencing the decision aids

Howard J, McNeill A, McDermott CJ, Bekker HL. Genetic testing and motor neuron disease: A decision aid. 2025. Available from: https://mymndgenetest.shef.ac.uk

Howard J, McNeill A, McDermott CJ, Bekker HL. Predictive genetic testing and motor neuron disease: A decision aid. 2025. Available from: https://mymndgenetest.shef.ac.uk/

Conflicts of interest

The authors have no conflicts of interest, financial or otherwise. These decision aids were developed from a research grant funded by the MND Association after external peer review. The funders, study team, steering committee and their employers do not stand to benefit from the decisions people make after reading this booklet.

Contact

Alisdair McNeill, Sheffield Institute for Translational Neuroscience, University of Sheffield.
a.mcneill@sheffield.ac.uk