There are still many unanswered questions about mitochondrial disease despite growing research activity in the UK and across the globe. Funding for research is limited, so it is essential that future research is directed to areas where it is needed most. For this to happen, funders must understand the most important research questions that still need answers. And who is best placed to provide these? It is the patients, carers and medical professionals who provide care to those affected by mitochondrial disease.
For this reason, Genetic Alliance are coordinating a Mitochondrial Disease Priority Setting Partnership (PSP) that aims to identify the top ten research priorities for mitochondrial disease. This is important as the results will help shape the future of mitochondrial research, so please help us and have your say!
The first stage of the PSP is a survey that has been developed by members of the PSP steering group, which includes Dr Rhys Thomas and Nurse Consultant Catherine Feeney from the WCMR and Newcastle upon Tyne Hospitals Trust. The survey asks people to think about the questions that are important to them and can cover anything related to mitochondrial disease, such as the cause, progression, care, treatment or managing day-to-day life.
When asked about the survey, Catherine said “it’s a short survey that includes free text questions with space to provide your views, and so it may be helpful for people to think about their answers before filling it in”. Catherine also said, “everyone’s views are important and remember there are no silly questions!”
If you have any questions about mitochondrial disease, we want to know. Please complete the survey here: www.bit.ly/mito-survey
If you are a patient or carer and other members of the family would also like to complete the survey, we would like to hear from them too.