Priority 19 (joint) from the Liver Glycogen Storage Disease (International) PSP

UNCERTAINTY: How to prevent and/or treat hormonal problems (i.e. thyroid, menstrual cycle, growth, diabetes, insulin response) in patients with liver Glycogen Storage Disease?  (JLA PSP Priority 19 (Joint))
Overall ranking 19 (Joint)
JLA question ID 0090/19 (Joint)
Explanatory note

As treatment of liver GSD is further optimized these past decades, the liver GSD cohort is ageing. As such, long-term complications associated with liver GSD and its treatment can be investigated further. 


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 Risk of developing concurrent diabetes ~ What are the long term effects from stress on the body due to GSD? ~ How big is the inference between GSD and hormones in female patients? ~ insuline reponse in gsd? 
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