Abstract
BackgroundPatient registries have great potential for providing data that describe disease burden, treatments, and outcomes; which can be used to improve patient care. Many renal registries exist, but a central repository of their scope, quality, and accessibility is lacking. The objective of this study was to identify and assess worldwide renal registries reporting on renal replacement therapy and compile a list of those most suitable for use by a broad range of researchers.MethodsRenal registries were identified through a systematic literature review and internet research. Inclusion criteria included information on dialysis use (yes/no), patient counts ≥300, and evidence of activity between June 2007 and June 2012. Public availability of information on dialysis modality, outcomes, and patient characteristics as well as accessibility of patient-level data for external research were evaluated.ResultsOf 144 identified renal registries, 48 met inclusion criteria, 23 of which were from Europe. Public accessibility to annual reports, publications, or basic data was good for 17 registries and moderate for 22. Patient-level data were available to external researchers either directly or through application and review (which may include usage fees) for 13 of the 48 registries, and were inaccessible or accessibility was unknown for 25.ConclusionsThe lack of available data, particularly in emerging economies, leaves information gaps about health care and outcomes for patients with renal disease. Effective multistakeholder collaborations could help to develop renal registries where they are absent, or enhance data collection and dissemination for currently existing registries to improve patient care.Electronic supplementary materialThe online version of this article (doi:10.1186/s12882-015-0028-2) contains supplementary material, which is available to authorized users.
Highlights
Patient registries have great potential for providing data that describe disease burden, treatments, and outcomes; which can be used to improve patient care
Subsequent application of the inclusion criteria resulted in 53 registries eligible for screening and review, all of which were contacted by email or telephone
Existing registries can provide valuable information about End-stage renal disease (ESRD) patients and inform or help monitor the implementation of policy for renal care, but registries vary in terms of types of data collected, data quality, and accessibility
Summary
Patient registries have great potential for providing data that describe disease burden, treatments, and outcomes; which can be used to improve patient care. Patient registries provide an organized and standardized method to systematically collect observational data about specific groups of patients managed in routine clinical practice for a predetermined objective [1]. Registry data can help describe the natural history, epidemiology, and burden of a disease; and capture treatment site, regional, or national variations in treatment and outcomes to help evaluate safety, quality, and value of patient care [2]. Data collected by patient registries may help researchers develop hypotheses about disease mechanisms or treatment approaches and inform health care policy thereby potentially improving quality. In 2011, US Medicare-related total ESRD expenditures were $34.4 billion, accounting for 7.2% of the total Medicare budget while serving only
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