Design and Basic Characteristics of a National Patient-Powered Registry in ADPKD
Hoover E, Perrone RD, Rusconi C, Benson B, Dahl NK, Gitomer B, Manelli A, Mrug M, Park M, Seliger SL, Phadnis MA, Thewarapperuma N, Watnick TJ. Design and Basic Characteristics of a National Patient-Powered Registry in ADPKD. Kidney360 2022, 3: 1350-1358. PMID: 36176661, PMCID: PMC9416821, DOI: 10.34067/kid.0002372022.Peer-Reviewed Original ResearchConceptsAutosomal dominant polycystic kidney diseaseKidney diseaseCore questionnaireManagement of ADPKDPatient-reported diagnosisPost-kidney transplantHealth-related qualityPatient-centered outcomesDominant polycystic kidney diseaseQuality of lifePolycystic kidney diseaseHispanics/LatinosCKD stageKidney transplantMedian ageKidney functionNational PatientBurden scoreDisease stageExtrarenal manifestationsPatient enrollmentADPKD patientsCreatinine valuesClinical trialsClinical studies