Priority 18 from the Liver Glycogen Storage Disease (International) PSP

UNCERTAINTY: How is the (natural) progression of liver Glycogen Storage Disease at different stages of life?  (JLA PSP Priority 18)
Overall ranking 18
JLA question ID 0090/18
Explanatory note

For several types of liver GSD the (natural) progression has been researched. However, this research is mainly focussed on developed countries and do not involve global initiatives. More reseach is necessary on global cohorts of patients with liver GSD (i.e. in registries) to study (natural) progression of the disease.  
Evidence

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 How do you cope with the disease changing as you age? ~ What to expect into adulthood? ~ What is the phenotype in adult age 
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