A global overview of renal registries: a systematic review

BMC Nephrology

Suzanne Laplante²  Sarah Prichard²  Karen Smoyer-Tomic³  Peter Rutherford¹  Frank Xiaoqing Liu² 

[1] Baxter Healthcare Corporation, Zürich, Switzerland;Baxter Healthcare Corporation, Deerfield, IL, USA;Oxford PharmaGenesis Inc, Newtown, PA, USA

关键词: Peritoneal dialysis;    Hemodialysis;    End-stage renal disease;    Renal replacement therapy;    Systematic review;    Renal registry;   

Others  :  1143825
DOI  :  10.1186/s12882-015-0028-2

 received in 2014-12-19, accepted in 2015-03-05,  发布年份 2015

【 摘 要 】

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.

【 授权许可】

   
2015 Liu et al.; licensee BioMed Central.

【 图 表 】

Figure 1.

Figure 2.

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