Burke et al. BMC Nephrology (2020) 21:320 https://doi.org/10.1186/s12882-020-01983-7 DATABASE Open Access Protocol and establishment of a Queensland renal biopsy registry in Australia Joseph Patrick Burke1†, Manaf Aljishi2†, Leo Francis3, Wendy Hoy1,4,5,6, Dakshinamurthy Divi7, Roy Cherian8, Jeremy Frazier9, Glenda Gobe4,6, Pedro Gois1,4, Sridevi Govindarajulu10, Sonny Huynh1, Shilpanjali Jesudason11, George John1, Krishan Madhan12,4, Andrew Mallett1,4, Valli Manickam13, Clyson Mutatiri14, Shu-Kay Ng15, Zaw Thet2,15, Peter Trnka4,16, Sree Krishna Venuthurupalli10 and Dwarakanathan Ranganathan1,15* Abstract Background: Renal biopsy is often required to obtain information for diagnosis, management and prognosis of kidney disease that can be broadly classified into acute kidney injury (AKI) and chronic kidney disease (CKD). The most common conditions identified on renal biopsy are glomerulonephritis and tubulo-interstitial disorders. There is a paucity of information on management strategies and therapeutic outcomes in AKI and CKD patients. A renal biopsy registry will provide information on biopsy-proven kidney disorders to improve disease understanding and tracking, healthcare planning, patient care and outcomes. Methods: A registry of patients, that includes biopsy-proven kidney disease, was established through the collaboration of nephrologists from Queensland Hospital and Health Services and pathologists from Pathology Queensland services. The registry is in keeping with directions of the Advancing Kidney Care 2026 Collaborative, established in September 2018 as a Queensland Health initiative. Phase 1 of the registry entailed retrospective acquisition of data from all adult native kidney biopsies performed in Queensland, Australia, from 2002 to 2018. Data were also linked with the existing CKD.QLD patient registry. From 2019 onwards, phase 2 of the registry involves prospective collection of all incident consenting patients referred to Queensland public hospitals and having a renal biopsy. Annual reports on patient outcomes will be generated and disseminated. Discussion: Establishment of the Queensland Renal Biopsy Registry (QRBR) aims to provide a profile of patients with biopsy-proven kidney disease that will lead to better understanding of clinico-pathological association and facilitate future research. It is expected to improve patient care and outcomes. Keywords: Renal biopsy, Renal, Registry, Queensland, Australia, Kidney diseases * Correspondence: [email protected] †Joseph Patrick Burke and Manaf Aljishi contributed equally to this work. 1Kidney Health Service, Royal Brisbane and Women’s Hospital, Brisbane, QLD, Australia 15School of Medicine, Griffith University, Brisbane, QLD, Australia Full list of author information is available at the end of the article © The Author(s). 2020 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. Burke et al. BMC Nephrology (2020) 21:320 Page 2 of 7 Background Lupus nephritis, another form of GN, has been shown Kidney disease is an increasing healthcare problem both to predominantly affect Australians of Asian descent globally and in Australia. Kidney injury can be acute [13]. Differences in prevalence of GN among popula- kidney injury (AKI) or chronic kidney disease (CKD). tions could also be explained by genetic factors. For AKI is estimated to occur in 16.9% of hospital episodes example, defects in alternative complement pathway in Australia and New Zealand [1], and subsequent renal may be involved in some forms of GN such as C3 glo- function decline is greater after AKI. Overall, 25% of merulopathy, atypical haemolytic-uraemic syndrome, AKI patients progress to CKD, even if post-discharge ANCA-related GN and immunoglobulin A nephropa- kidney function returns to normal [2]. The first national thy [14]. Even though there is some information that report on AKI in Australia has shown that AKI is a genetics, geography, environment, race and socio- growing problem that disproportionally affects those res- economic conditions play a role, data are inconclusive iding in socioeconomically disadvantaged areas who have on the longitudinal course, management strategies and higher AKI hospitalisation and death rates [3]. National therapeutic outcomes of these patients [7]. There is also renal biopsy registries provide useful information in little clinical or research collaboration and lack of long- biopsy-confirmed AKI. Spanish data from a renal regis- term studies from Australia on the outcome of biopsy- try study collected over a decade showed that 16.1% of proven acute kidney disorders or tubulointerstitial ne- the biopsies were diagnosed with AKI, with the prevalence phritides. A comprehensive database or registry, includ- order of biopsy-confirmed acute renal failure according to ing patient demographics, co-morbidities, laboratory aetiology as vasculitis (23.3%), acute tubulointerstitial investigations, histological diagnosis, treatment and nephritis (11.3%) and crescentic glomerulonephritis (GN) outcome of biopsy proven renal disorders, is therefore (10.1%). This study also highlighted that the prevalence of required. the different causes differed significantly according to age The creation of a renal biopsy registry can facilitate group [2]. conducting high quality trials [15]. Kidney (or renal) bi- Approximately 1.7 million Australian adults have opsy registries have been established in many countries CKD, with 17,000 deaths with CKD listed as an under- to understand kidney disease epidemiology, enhance ne- lying or associated cause of death in 2017 [4]. The most phrologists’ collaboration to improve patient care, and common causes of CKD in Australia are diabetic kidney evaluate new clinical interventions [1, 16]. Several renal disease, glomerulopathy, tubulointerstitial disorders of biopsy registries exist to address the natural history of the kidney and hypertensive nephropathy. The incidence kidney disease, describe the clinical features, evaluate of GN is about 0.7–2.8 per 100,000/year [5] and is the treatment, understand risk factors for complications, and second leading cause of end-stage kidney disease (ESKD) support studies and health services research in these dis- requiring kidney replacement therapy in Australia and orders. Examples include the Danish Renal Biopsy Regis- New Zealand [6]. These disorders, therefore, pose a sig- ter [17], the Canadian Glomerulonephritis Registry [18], nificant burden to the health care system as the risk of the Czech Registry of renal biopsies [19], the Spanish progression to ESKD is high. The annual cost of hospital Registry of Glomerulonephritis [20], the Italian Registry haemodialysis per ESKD patient in Australia is estimated of Renal Biopsy [21] and Japan Renal Biopsy Registry to be around AUD$ 80,000 [7]. [22]. There is no established renal biopsy registry in There is a growing interest and research on the epi- Australia. Data on the epidemiology of biopsy proven demiology of GN to shed light on its trends, environmen- GN was first published from Victoria in 2001 [23] and tal origins and pathogenesis, and generate hypotheses for 15 years later from Queensland [8]. There have been no novel treatment options. An increasing incidence of rap- significant changes over time with age, gender or inci- idly progressive crescentic GN over the last decade has dence of biopsy proven GN in Australia [8]. A recent been observed, with 75% of it due to anti-neutrophil cyto- study on biopsy proven GN from New Zealand has plasmic antibody-associated GN (ANCA GN) [8]. Gross shown age, hypertension and heavy proteinuria at diag- variation in biopsy proven ANCA GN has been found nosis are strong predictors of progression to ESKD and across two metropolitan Queensland hospitals although death [24]. Nevertheless, there is a paucity of data and they provide services to population of similar size of about high-quality clinical trials on GN on its pathogenesis, one million each. Silica dust from mining industry is con- management strategies and therapeutic outcomes. Some sidered as a risk factor for ANCA GN [9, 10]. The exact reasons for this are lack of consensus in pathological reasons for the increasing trend or for disparity in differ- definitions, low prevalence of disease, difficulty in re- ent locations are not known. Aboriginal adults have an in- cruitment, high costs of trials and lack of collaboration. creased incidence of CKD and ESKD [11]. The reasons Renal biopsy registry can facilitate such research and are not entirely understood,