Priority 13 from the Mitochondrial Disease PSP

UNCERTAINTY: What can prevent mitochondrial disease from getting worse over time? (JLA PSP Priority 13)
Overall ranking	13
JLA question ID	0095/13
Explanatory note	Not available
Evidence	None identified
Health Research Classification System category	Metabolic and Endocrine

Extra information provided by this PSP
Original uncertainty examples	treatments to prevent progression/ 2nd eye involvement. ~ Progression as it's the most under researched ~ What is the role of exercise in preventing decline in vision in patients affected by vision loss with LHON? ~ What speeds up or slows down progression ~ Can adult onset MiTo disease (after some progression) improve and symptoms disappear with good management and care? ~ What can We do to slow progression ~ Anything to limit the condition or improve any longevity would be of interest ~ Also how it has progressed and whether anything can be done to slow progression.
Submitted by	14 x Carers, 7 x Healthcare Professionals, 7 x Patients

Extra information provided by this PSP

Original uncertainty examples

treatments to prevent progression/ 2nd eye involvement. ~ Progression as it's the most under researched ~ What is the role of exercise in preventing decline in vision in patients affected by vision loss with LHON? ~ What speeds up or slows down progression ~ Can adult onset MiTo disease (after some progression) improve and symptoms disappear with good management and care? ~ What can We do to slow progression ~ Anything to limit the condition or improve any longevity would be of interest ~ Also how it has progressed and whether anything can be done to slow progression.

Submitted by

14 x Carers, 7 x Healthcare Professionals, 7 x Patients

PSP information
PSP unique ID	0095
PSP name	Mitochondrial Disease
Total number of uncertainties identified by this PSP.	42 (To see a full list of all uncertainties identified, please see the detailed spreadsheet held on the JLA website)
Date of priority setting workshop	19 January 2020