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 living with 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 was completed earlier this year and involved an online survey developed by members of the PSP steering group, including Dr Rhys Thomas and Nurse Consultant Catherine Feeney from the WCMR and Newcastle upon Tyne Hospitals Trust. The survey identified the most important research questions in relation to different aspects of mitochondrial disease, such as the cause, progression, care, treatment or managing day-to-day life.
The second stage of the PSP is now underway and this is where we need your help again! The next online survey is live and requires those responding to look at the research questions submitted in the first stage and select the top ten that are most important to them. You are then asked to rank them in order of priority, from the most important to the least important.
The survey is available until 25th November 2019 and can be found using the following link: http://bit.ly/2nd-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.