Design and Basic Characteristics of a National Patient-Powered Registry in ADPKD.

Elise HooverRonald D PerroneChris RusconiBeverly BensonNeera K DahlBerenice GitomerAmy ManelliMichal MrugMeyeon ParkStephen L Seliger Milind A PhadnisNadeesha ThewarapperumaTerry J Watnick

Published in: Kidney360 (2022)

The Registry described here is the only one of its kind and is a valuable longitudinal research tool encompassing all stages of ADPKD. The registry will allow investigators to pursue a range of research questions related to the management of ADPKD, including definition of health-related quality of life (HRQoL) outcomes and recruitment for a variety of observational and therapeutic clinical protocols.

Keyphrases

polycystic kidney disease
cross sectional
case report
quality improvement
type diabetes
metabolic syndrome
insulin resistance
weight loss
drug induced