A global overview of renal registries: a systematic review

Abstract

Background: Patient 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.

Methods: Renal 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.

Results: Of 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.

Conclusions: The 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.

Figure 1

Registry data analysis and reporting process. ^aA registry was excluded if it had been defunct for more than 5 years, had ≤300 participants, did not include data related to dialysis, was contained in and/or was redundant to another registry that was more appropriate for analysis. ^bReviewed databases not reported due to lack of available information (ie, insufficient data available through public sources and did not respond to queries for more information) included Israeli Society of Nephrology and Hypertension (The Official Israeli Nephrology Site), Madrid Registry of Renal Patients (although it did provide aggregate data to the Spanish Registry of Renal Patients), and Polish Registry of Renal Replacement Therapy in Children. The Scientific Registry of Transplant Recipients and Japan Renal Transplantation Registry were also excluded for focusing exclusively on transplant patients and providing no information on dialysis modalities.

Figure 2

Geographical distribution of analyzed registries (n = 48).