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)|
|JLA question ID||0090/18|
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.
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 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|