Priority 2 from the Autosomal Dominant Polycystic Kidney Disease Project

UNCERTAINTY: Which people with ADPKD would benefit from early treatment and how can doctors identify them? (Priority 2)
Overall ranking	2
JLA question ID	0103/2
Explanatory note	Not available for this PSP
Evidence	No evidence identified
Health Research Classification System category	Renal and urogenital

Extra information provided by this project
Original uncertainty examples	Development of criteria for individualisation of treatments for polycystic liver disease, in people with ADPKD, and evaluation of treatment outcomes. ~ In people with ADPKD which interventions are effective and safe for preventing progression of the disease, considering outcomes such as progression to ESKD, need for transplantation, mortality, hospital admissions, major morbidities and quality of life? ~ Implementation of methods to routinely assess prognosis in patients with ADPKD to inform clinical decision-making, research and innovation. ~ What is the role of modifier genes in predicting disease progression in people with ADPKD?
Submitted by	3 x research recommendations and Kidney Disease Improving Global Outcomes (KDIGO)

Extra information provided by this project

Original uncertainty examples

Development of criteria for individualisation of treatments for polycystic liver disease, in people with ADPKD, and evaluation of treatment outcomes. ~ In people with ADPKD which interventions are effective and safe for preventing progression of the disease, considering outcomes such as progression to ESKD, need for transplantation, mortality, hospital admissions, major morbidities and quality of life? ~ Implementation of methods to routinely assess prognosis in patients with ADPKD to inform clinical decision-making, research and innovation. ~ What is the role of modifier genes in predicting disease progression in people with ADPKD?

Submitted by

3 x research recommendations and Kidney Disease Improving Global Outcomes (KDIGO)

Project information
Project unique ID	0103
Project name	Autosomal Dominant Polycystic Kidney Disease
Total number of uncertainties identified by this project.	35 (To see a full list of all uncertainties identified, please see the detailed spreadsheet held on the JLA website)
Date of priority setting workshop	15 December 2020