title: 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.
authors.affiliation: Baxter Healthcare Corporation, Deerfield, IL, USA. xiaoqing_liu@baxter.com.
authors.forename: Frank Xiaoqing
authors.initials: FX
authors.lastname: Liu
authors.affiliation: Baxter Healthcare Corporation, Zürich, Switzerland. peter_rutherford@baxter.com.
authors.forename: Peter
authors.initials: P
authors.lastname: Rutherford
authors.affiliation: Oxford PharmaGenesis Inc, Newtown, PA, USA. ketomic@gmail.com.
authors.forename: Karen
authors.initials: K
authors.lastname: Smoyer-Tomic
authors.affiliation: Baxter Healthcare Corporation, Deerfield, IL, USA. sarah_prichard@baxter.com.
authors.forename: Sarah
authors.initials: S
authors.lastname: Prichard
authors.affiliation: Baxter Healthcare Corporation, Deerfield, IL, USA. suzanne_laplante@baxter.com.
authors.forename: Suzanne
authors.initials: S
authors.lastname: Laplante
mesh_terms: D005260:Female; D014943:Global Health; D006801:Humans; D007676:Kidney Failure, Chronic / Q000175:diagnosis / Q000453:epidemiology* / Q000628:therapy*; D008297:Male; D010530:Peritoneal Dialysis / Q000379:methods / Q000706:statistics & numerical data; D015995:Prevalence; D012042:Registries; D006435:Renal Dialysis / Q000379:methods / Q000706:statistics & numerical data; D016019:Survival Analysis