Inherited motor neurone disease (MND)
Credits
Jade Howard
Jade Howard is a PhD student at the Health Services Research Unit, University of Aberdeen. Jade’s research looks at family experiences of inherited forms of MND, focusing on the experiences of family members living with an increased risk of the disease. Jade carried out the interviews as part of her PhD, led the analysis and drafted topic summaries, with feedback from other advisory panel members.
Dr Louise Locock
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Louise Locock is a qualitative researcher and professor in health services research at the University of Aberdeen. Before joining the University of Aberdeen in 2017, she was Director of Applied Research at the Health Experiences Research Group, University of Oxford, and has led numerous studies disseminated on this site, including the section on MND. Louise supported Jade in preparing topic summaries as lead PhD supervisor.
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.
