Priority 7 from the Liver Glycogen Storage Disease (International) PSP

UNCERTAINTY: What is the role for new methods for monitoring metabolic control (like noninvasive continuous glucose and lactate measurements, new biomarkers) for patients with liver Glycogen Storage Disease?  (JLA PSP Priority 7)
Overall ranking 7
JLA question ID 0090/7
Explanatory note

Metabolic control in patients with liver GSD is poorly defined and is based on markers that are indirectly linked to the metabolic blockade and are invasive to measure. The focus of this research question is to more closely monitor metabolic control with new technologies.
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 Are there advanced monitoring technologies for GSD? What countries are offering these tools? ~ Development of a non-invasive continuous glucose and lactate meter for glycogenosis patients ~ Continuous blood sugar measurement- advantages compared to 3rd month  controls. 
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