Priority 3 from the Autosomal Dominant Polycystic Kidney Disease Project

UNCERTAINTY: What are the best ways to organise the care of people with ADPKD to improve their outcomes? (Priority 3)
Overall ranking	3
JLA question ID	0103/3
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	What are the long-term effects of improved care, including morbidity and mortality, on people with ADPKD? ~ Development of criteria to develop ADPKD care-centres of excellence. ~ What are the benefits and harms, including cost, of care-centres of excellence for people with ADPKD? ~ How is telenephrology best used to improve care for people with ADPKD? ~ Development of a nationally coordinated, tiered approach to ADPKD care in collaboration with experts, patient organisations and other stakeholders. ~ Establishment of an expanded European network of ADPKD reference centres to facilitate further research and the establishment of harmonised, integrated, patient-centred care pathways. ~ What are the best strategies for the development of tiered care approaches to ensure that people with ADPKD have appropriate access to specialist, multidisciplinary management?
Submitted by	2 x research recommendations and Kidney Disease Improving Global Outcomes (KDIGO)

Extra information provided by this project

Original uncertainty examples

What are the long-term effects of improved care, including morbidity and mortality, on people with ADPKD? ~ Development of criteria to develop ADPKD care-centres of excellence. ~ What are the benefits and harms, including cost, of care-centres of excellence for people with ADPKD? ~ How is telenephrology best used to improve care for people with ADPKD? ~ Development of a nationally coordinated, tiered approach to ADPKD care in collaboration with experts, patient organisations and other stakeholders. ~ Establishment of an expanded European network of ADPKD reference centres to facilitate further research and the establishment of harmonised, integrated, patient-centred care pathways. ~ What are the best strategies for the development of tiered care approaches to ensure that people with ADPKD have appropriate access to specialist, multidisciplinary management?

Submitted by

2 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