Investigating and understanding pain in MND to create better ways to assess and manage it across the UK.
Principal Investigator: Dr Haris Stavroulakis
Lead Institution: University of Sheffield
MND Association Funding: £299,561
Funding dates: April 2026 - March 2029
About the project
Pain is increasingly recognised as a common and impactful non-motor symptom linked to MND, and it can interfere with the quality of life for people living with MND. However, there is currently limited research understanding pain in MND, and clinical management can vary because there are no established national guidelines on pain management in MND. This presents an urgent need for a consistent, evidence-based approach to pain care in MND.
In this project, the researchers are addressing this gap by conducting a thorough investigation into pain management in MND. This includes questionnaire surveys and interviews with people with MND, their family carers, and clinicians. They will collect real-world data from a group of people with MND over time on how common pain is and its impact. The research will be brought together to create a clear, evidence-based step-by-step guide for assessing and managing pain in MND.
What could this mean for MND research?
This project aims to understand pain in MND and create better ways to assess and manage it across the UK. The researchers will share the results of their research with healthcare professionals, MND charities, and directly with patients and their families, making sure the information is easy to understand. This research is hoping to improve patient-centred care and evidence-based practice in MND.
Project code: 2549-794