RAPID-ADPKD (Retrospective epidemiological study of Asia-Pacific patients with rapId Disease progression of Autosomal Dominant Polycystic Kidney Disease): study protocol for a multinational, retrospective cohort study

Abstract

IntroductionPatients with autosomal dominant polycystic kidney disease (ADPKD) reach end-stage renal disease in their fifth decade on average. For effective treatment and early intervention, identifying subgroups with rapid disease progression is important in ADPKD. However, there are no epidemiological data on the clinical manifestations and disease progression of patients with ADPKD from the Asia-Pacific region.Methods and analysisThe RAPID-ADPKD (Retrospective epidemiological study ofAsia-Pacific patients with rapIdDisease progression ofAutosomalDominantPolycysticKidneyDisease) study is a multinational, retrospective, observational cohort study of patients with ADPKD in the Asia-Pacific region (Australia, China, Hong Kong, South Korea, Taipei and Turkey). This study was designed to identify the clinical characteristics of patients with ADPKD with rapid disease progression. Adult patients with ADPKD diagnosed according to the unified ultrasound criteria and with an estimated glomerular filtration rate (eGFR) ≥45 mL/min/1.73 m2at baseline will be included. The cohort will include patients with ≥2 records of eGFR and at least 24 months of follow-up data. Demographic information, clinical characteristics, comorbidities, medications, eGFR, radiological findings that allow calculation of height-adjusted total kidney volume, ADPKD-related complications and the Predicting Renal Outcomes in autosomal dominant Polycystic Kidney Disease (PRO-PKD) score will be collected. Rapid progression will be defined based on the European Renal Association – European Dialysis and Transplant Association (ERA-EDTA) guideline. All other patients without any of these criteria will be classified to be of slow progression. Clinical characteristics will be compared between patients with rapid progression and those with slow progression. The incidence of complications and the effects of race and water intake on renal progression will also be analysed. The planned sample size of the cohort is 1000 patients, and data from 600 patients have been collected as of 30 May 2019.Ethics and disseminationThis study was approved or is in the process of approval by the institutional review boards at each participating centre. The results will be presented in conferences and published in a journal, presenting data on the clinical characteristics, risk factors for disease progression and patterns of complications of ADPKD in Asian populations.

Clinical and genetic characteristics of Korean autosomal dominant polycystic kidney disease patients

“…Currently, a multinational multicenter retrospective cohort study is in progress to determine the clinical characteristics of rapidly progressing patients with ADPKD from six countries in the Asia-Pacific region: Australia, China, Hong Kong, Korea, Taiwan, and Turkey; using the current recommendation for the identification of rapid progression [ 53 ].…”

Health Disparities in Kidney Failure Among Patients With Autosomal Dominant Polycystic Kidney Disease: A Cross-Sectional Study

“…Currently, the Retrospective epidemiological study of Asia-Pacific patients with rapId Disease progression of Autosomal Dominant Polycystic Kidney Disease (RAPID-ADPKD) is underway in the Asia-Pacific region to identify epidemiological data on clinical manifestations and disease progression in ADPKD populations in this region. 30 …”

Clinical Characteristics of Rapid Progression in Asia-Pacific Patients With ADPKD

“…The study protocol of the RAPID-ADPKD study has published elsewhere. 15 Briefly, this was a multinational, retrospective observational medical chart review study from the Asia-Pacific region. Each site investigator completed an electronic case report form for eligible patients with ADPKD who were identified according to inclusion and exclusion criteria.…”

“…Therefore, the retrospective epidemiologic study of Asian-Pacific patients with rapid disease progression of Autosomal Dominant Polycystic Kidney Disease (RAPID-ADPKD), a multinational retrospective observational cohort study of patients with ADPKD in the Asia-Pacific region, was developed. 15 This study assessed the clinical utility of various assessment strategies to predict RPs based on the ERA-EDTA WGIKD/ERBP algorithm in patients enrolled in the RAPID-ADPKD study. The characteristics and outcomes of patients classified as either RPs or SPs were also investigated.…”