Enabling informed policymaking for chronic kidney disease with a registry: Initiatory steps in Iran and the path forward

Chronic kidney disease (CKD) registries have been used for more than half a
century. Iran lacks a comprehensive registry to capture data of all CKD patients for an informed
care planning and policy making. We aimed to identify the objectives and possible challenges
for developing a CKD registry and also to define its minimum data set (MDS) in our healthcare
context.
Methods: This was a mixed-method study conducted in Iran from fall 2016 till summer 2017.
The qualitative part included document analysis and 26 semi-structured interviews with 17
clinicians and managers involved in CKD care. This data was analyzed using the "grounded
theory". Then, a modified Delphi survey was conducted. Percentages and mode values were
used for analysis.