A global overview of renal registries: a systematic review

Based on our survey of renal registries, we identified 144 for further evaluation, and analyzed 53 in detail. Subsequently, 3 were excluded for not meeting inclusion criteria and 2 more for lack of available information, resulting in 48 registries analyzed and reported. Most of the 48 registries provided information on transplantation and dialysis modality, yet very few provided treatment cost data or clinical or patient outcomes other than on mortality. Of the 48 analyzed registries, 17 were deemed to provide good public access to information such as detailed reports and publications, and 23 were determined to allow access to individual-level patient data as required to conduct real-world research. Several of these registries offered data analysis services through registry statisticians as part of a contracted research project or via collaboration with registry researchers.

In the era of patient-centered care, registries with complete clinical, humanistic, and economic information on patients are essential to help monitor and improve patient outcomes. Health care systems should have a vested interest in supporting registry activity, particularly in acquiring, maintaining, and analyzing the data. High-quality registries provide valuable information that can impact health care procedures, policy, and ultimately, population health. A number of therapeutic areas provide powerful examples of how registry data can positively affect patient care. For example, the European Network of Cancer Registries publishes fact sheets and treatment recommendations, provides training courses, and holds international conferences to present the latest data and recommendations to improve patient assessment and care [10]. In the US, the National Cardiovascular Disease Registry provides evidence-based quality improvement solutions for HCPs and guidance on facility-based issues like accreditations, cost control, reimbursements, and securing and retaining high-level clinicians [11]. Similar programs could be of significant benefit for ESRD patients, some of which have already begun. For example, cost data ascertained through the USRDS helped drive a recent shift in health care policy with the End-Stage Renal Disease Prospective Payment System, designed to better manage costs for ESRD treatment [12]. Data from the ESRD Networks in the United States (www.​esrdncc.​org) support the Fistula First Breakthrough Initiative, introduced to advance arteriovenous fistula placement and reduce central venous catheter use to improve patient survival and QoL by providing a number of incentives for both patients and health care providers (see http://​www.​fistulafirst.​org). The peritoneal dialysis first initiative by the Universal Health Coverage Scheme (UCS) in Thailand [13] and the call to action by nephrologists from Australia and New Zealand use ESRD registry data to address observed low survival rates with PD [14]. Finally, the Latin American Dialysis and Renal Transplant Registry along with the Latin American Society of Nephrology and Hypertension have supported a sustained effort within the entire Latin American nephrology community by hosting seminars for the creation and/or improvement renal registries throughout Latin America [15,16].

We identified a number of gaps in renal registry coverage, revealing that, despite large ESRD patient populations and an established framework for data collection in many countries, opportunities for tracking patient care are being missed. First, although many renal registries have been established around the world, less than half that met our analysis criteria provided information accessible to the general public, and few had suitable patient-level data availability and access needed to generate evidence to support improved patient care. Data on the burden of dialysis on patients and caregivers and on societal and payer costs of care were also limited. Second, few registries were identified in areas with emerging economies; the majority being based in high-income countries, creating geographic gaps in coverage. In much of the Asia-Pacific region, the Middle East, and Africa, registries were either absent entirely or had limited data or poor accessibility for outside research. Additionally, some of the world’s most populous health care systems like China, Russia, and India currently have limited (eg, limited to 1 city like Moscow or Shanghai) or inadequate registries. Of particular note is India, which has an age-adjusted incidence of ESRD of 232 per million population [17]. Although some ESRD patients are captured in the India chronic kidney disease registry, [18] there is no specific registry for ESRD.

We also identified a lack of uniformity in the type and quality of data collected and in how modalities were reported. For example, some registries reported high-level information on HD and PD submodalities, but did not provide details on associated outcomes (eg, the USRDS reported the percentage distribution of CAPD vs. APD, but not outcomes from these). Limited data are available in registries to compare the use of, or outcomes in, patients receiving hemodialysis vs. hemodiafiltration in Europe despite its wide availability across that region. Thus, the performance of different dialysis methods in a real-world clinical setting is poorly understood due to limitations in existing registry data. This is a particular concern considering that registries are generally not organized or funded to integrate new data elements [1], and thus information on submodalities may be missed as dialysis therapies evolve. Current treatment data need to be incorporated into registries to address this gap in dialysis treatment information.

Finally, we also encountered a general difficulty in accessing detailed registry data; both aggregated data for the general public, and patient-level data for external research. We concluded that research using many of the identified renal registries with high-quality information would be restricted by both limited data collection and dissemination as well as access to external researchers. Even for registries that might be receptive to collaboration, registry personnel may lack time or resources to conduct and publish studies, resulting in a backlog of information that is not disseminated. Although there initially appeared to be a large number (144) of renal registries globally, only a small minority had comprehensive patient-level data readily accessible for external research, and these tended to be in high-income countries. These restrictions on registry data accessibility limit opportunities for real-world research of treatment patterns and associated outcomes, potentially missing opportunities to improve patient care.

This study has several limitations. First, the analysis was completed as of June 2012, and thus some newer registries like the recently established South African Renal Registry (first annual report published in 2014) were not included. It is also possible that the registries we examined here added or made available new information since our analysis was completed. Second, if a registry was operating with no public-facing information like a website, periodic reports, or literature publications, it could have gone undetected. Finally, it should be noted that the ranking system (eg, as shown in Table 2) was inherently subjective, based on best information available at the time and the researchers’ interpretation of this information.

Based on the study findings, a number of recommendations emerged. Gaps in registry coverage, data collection and completeness of case ascertainment, and accessibility present an opportunity for more productive collaborations to collect relevant data, implement quality and standardization procedures, and provide broad access to comprehensive aggregate information and anonymized patient-level data to facilitate the advancement of patient care. Communication with local governments and health authorities can be initiated to begin to address data gaps identified in this analysis to improve data quality and accessibility. New data elements and key patient information (eg, detailed patient information; dialysis access, new modalities, and initiation dates; QoL; and costs) could be incorporated into existing registries. Additionally, specific mechanisms to report and improve data quality, resources to maintain and update registries, and increased accessibility are needed. For example, inroads to existing, seemingly difficult-to-access renal registries could be developed to expand opportunities for more thorough data analysis and outcomes research, thus leveraging the existing registry infrastructure while building collaboration. Through multistakeholder collaboration, opportunities could be pursued to develop or expand renal registries in large but poorly represented countries such as India, China, and the Russian Federation. These partnerships could help address the human resource and financial issues inherent in maintaining a high-quality registry. Additionally, established registries or societies like the International Society of Nephrology could potentially assist with the formation of new registries in less developed countries by providing assistance with process and protocol development, information technology expertise, and infrastructure required to initiate patient registries. Finally, global guidelines for uniform and centralized data collection and quality assurance across all geographic areas could be proposed. Current examples of this type of initiative include the recently established EURODOPPS (a partnership between the ERA-EDTA and Dialysis Outcomes and Practice Patterns) [19,20], the Registry of Patient Registries by the US Agency for Healthcare Research and Quality; and the ERA-EDTA/SLANH Registries Fellowships [21]. These programs help expand knowledge on the epidemiology of ESRD and treatment approaches by leveraging strengths and pooling the resources of multiple initiatives. This can help address scientific and policy questions, facilitate research, compare and pool results between registries, and use the strengths contained in multiple registries to generate new insights into treatments for ESRD patients.