Priority 2 from the Liver Glycogen Storage Disease (International) PSP

UNCERTAINTY: Can consensus guidelines (for management) be achieved for patients with liver Glycogen Storage Disease?  (JLA PSP Priority 2)
Overall ranking 2
JLA question ID 0090/2
Explanatory note

There have been guidelines for several of the several GSD subtypes (Ia, Ib, III, VI, IX) from specific countries. Global management guidelines are lacking.


For details of the evidence checked, please see the spreadsheet held on the JLA website.

Health Research Classification System category Metabolic and endocrine 
Extra information provided by this PSP
Original uncertainty examples Would the doctor publish dietary regime for adults with 1a so others who are unable to get in to see the doctor can have the same success as others? ~ How can a globally unified treatment be achieved? ~ Would like more research with foods and sugars so there would be a consensus throughout the world. 
Submitted by Patient, carer and healthcare professionals 
PSP information
PSP unique ID 0090
PSP name International Glycogen Storage Disease PSP
Total number of uncertainties identified by this PSP 72  (To see a full list of all uncertainties identified, please see the detailed spreadsheet held on the JLA website)
Date of priority setting workshop 24 May 2019