A survey of health-related experiences of climate change for people affected by mitochondrial disease
What is this study about?
Changes in weather, including heatwaves and other extreme weather events, can make life more difficult for people living with neurological conditions.
Researchers would like to learn more about the experiences of people with mitochondrial disease during adverse weather conditions, such as very hot days, heavy rainfall and flooding.
The research aims to improve understanding of the effects of heat and other extreme weather events on health, particularly for people living with neurological conditions. The researchers hope the findings will contribute to guidance for improved care and management of conditions during adverse weather.
Where will the study take place and who is responsible?
This is an online survey conducted by clinicians from the National Hospital for Neurology and Neurosurgery, part of University College London Hospitals NHS Foundation Trust (UCLH), and researchers from the Queen Square Institute of Neurology at University College London (UCL).
The survey has received approval as a service evaluation run by UCLH.
Who can take part?
The survey can be completed by or for anyone with any type of mitochondrial disease.
You can answer the questions yourself if you have mitochondrial disease, or a supporter, carer or family member can complete the survey on your behalf.
The researchers would prefer that only one response is submitted for each person living with mitochondrial disease, so you can decide who is most suitable to complete the survey.
What’s involved?
The online survey has 40 questions and takes approximately 20-30 minutes to complete.
The questions ask about your experiences of difficult weather conditions and mitochondrial disease. You’re encouraged to answer all the questions, but those marked as optional can be left blank if you’d prefer not to provide the information requested.
The survey is anonymous and your answers will not be linked to your name.
You can stop answering the questions at any point. If you haven’t completed the survey, your completed responses will be saved. You can return to the survey later and continue. Please do this within 2 weeks and use the same internet browser on the same device as you used previously.
The closing date for completing the survey is 30th November 2026.
