Acknowledgements

We would like to thank the people who participated in this research by sharing their experiences. We are also grateful to everyone who provided feedback, advice and support in developing this module, including interview participants, advisory panel members, and co-investigators.

Advisory panel

Jane Parker – family advisor

Karen Roberts – family advisor

Maggie Hutson – family advisor

JW – family advisor (who wished to remain anonymous)

Martin Turner – Professor of Clinical Neurology & Neuroscience, University of Oxford & Co-Director of the Oxford MND/ALS Centre

Mandy Spencer – Research Information Co-ordinator, MND Association

Sue Ziebland – Professor of Medical Sociology and Co-Director of MS&HERG, University of Oxford

Ruth Sanders – Research Delivery Project Manager, MS&HERG, University of Oxford

Karen Forrest Keenan – Study Coordinator, Epidemiology Group, University of Aberdeen and PhD co-supervisor

Fadhila Mazanderani – Senior Lecturer, Science, Technology & Innovation Studies, University of Edinburgh and PhD co-supervisor

Lynn Ossher – Strategic Initiatives Manager, Nuffield Department of Clinical Neurosciences.

Rachael Marsden – MND Consultant Nurse and the Care Centre Coordinator, Oxford MND Centre

Rhona MacLeod – Consultant Genetic Counsellor

Nayana Lahiri – Consultant in Clinical Genetics at St George’s Hospital

Funders

We are grateful to the MND Association for funding this project (Grant reference number: Locock/Sept19/941-794; Chief Investigator Prof Louise Locock, co-investigators Prof Martin Turner and Prof Sue Ziebland, University of Oxford, and Adam Barnett, chief executive of the Dipex Charity). Jade Howard’s PhD was funded by the Institute of Applied Health Sciences, University of Aberdeen.