Table 2.
Data summary for reported registries (n = 48)
| Region | Registry Name (Common Abbreviation), Year Established | Accessibility | Patient-level data availability | Treatments | Outcomes |
|---|---|---|---|---|---|
| Asia/Pacific (n = 8) | Australia and New Zealand Dialysis and Transplant Registry (ANZDATA), 1963 | +++ | ++ | +++ | +++ |
| Hong Kong Renal Registry (HKRR), 1995 | + | + | +++ | +++ | |
| Korean Renal Registry, 1985 | ++ | ++ | +++ | +++ | |
| Malaysian National Renal Registry (NRR), 1993 | ++ | +++ | +++ | +++ | |
| Shanghai Dialysis Registry, 1996 | + | + | ++ | +++ | |
| Singapore Renal Registry, 2001 | +++ | ++ | +++ | +++ | |
| Taiwan Renal Registry Data System (TWRDS), 1987 | + | + | +++ | + | |
| Thailand Renal Replacement Therapy Registry (TRT), 1997 | ++ | + | +++ | + | |
| Europe (n = 23) | Austrian Dialysis and Transplant Registry (OEDTR)*, ≤ 1990 | ++ | + | ++ | +++ |
| Belgian Society of Nephrology (Dutch-speaking) (NBVN)*, ≤ 1996 | ++ | ++ | +++ | + | |
| Catalan Renal Registry (RMRC)*, 1984 | ++ | + | ++ | +++ | |
| Danish Registry on Regular Dialysis and Transplantation (DNSL)*, 1990 | +++ | +++ | +++ | +++ | |
| Dutch Renal Registry (RENINE), 1986 | ++ | + | ++ | +++ | |
| European Renal Association - European Dialysis and Transplant Association (ERA-EDTA), 1963 | +++ | ++ | +++ | +++ | |
| Finnish Registry for Kidney Diseases*, 1964 | +++ | +++ | +++ | +++ | |
| French Renal Epidemiology and Information Network (REIN), 2002 | ++ | + | +++ | +++ | |
| Greek Registry (Hellenic Society of Nephrology)*, 2000 | + | + | + | + | |
| Groupement des Nephrologues Francophones de Belgique (GNFB), 1995 | ++ | + | ++ | +++ | |
| Italian Dialysis and Transplant Registry (RIDT)*, 1996 | +++ | + | ++ | +++ | |
| Norwegian Renal Registry*, 1994 | ++ | +++ | ++ | +++ | |
| Peritoneal Dialysis Board Registry (GSDP), ≤ 2001 | ++ | + | +++ | +++ | |
| Portuguese Society of Nephrology*, 1997 | ++ | + | ++ | +++ | |
| Romanian Renal Registry (RRR)*, 1993 | + | ++ | ++ | + | |
| Russian Registry*, 1998 | ++ | + | +++ | +++ | |
| Scottish Renal Registry (SRR)*, 1991 | +++ | +++ | +++ | +++ | |
| Spanish Society of Nephrology Register (Peritoneal Dialysis Registry) (SEN), 1997 | ++ | + | ++ | ++ | |
| Spanish Society of Nephrology Register (Records of Renal Patients [GRER]), 1997 | ++ | + | +++ | +++ | |
| Swedish Renal Registry (SNR/SRR)*, 2007 | ++ | ++ | ++ | +++ | |
| Turkish National Registry (TSNRR)*, 1990 | ++ | + | +++ | +++ | |
| United Kingdom Renal Registry (UKRR)*, 1997 | +++ | +++ | +++ | +++ | |
| Valencian Renal Registry*, 1992 | +++ | ++ | +++ | +++ | |
| Latin/South America (n = 5) | Sociedad Argentina de Nefrologia (SAN)/Instituto Nacional Central Unico Coordinator de Ablación e Implante (INCUCAI); 2004 | +++ | +++ | +++ | +++ |
| Brazilian Registry of Dialysis (RBD/SBN), 1998 | + | + | ++ | +++ | |
| Colombia Healthcare Database, ≤ 2008 | +++ | +++ | ++ | + | |
| Latin American Dialysis and Transplantation Registry (SLANH/RLDT), 1991 | ++ | + | ++ | + | |
| Uruguayan Registry of Dialysis, 1981 | +++ | +++ | +++ | +++ | |
| Middle East (n = 1) | United Arab Emirates Renal Diseases Registry, 1980 | + | + | + | + |
| North America (n = 7) | British Columbia Renal Database - Patient Records and Outcome Management Information System (PROMIS), 2003 | + | +++ | ++ | + |
| Canadian Organ Replacement Register (CORR), 1994 | +++ | +++ | +++ | ++ | |
| Canadian Pediatric End-Stage Renal Disease Database, ≤ 2010 | ++ | + | + | + | |
| Database of the Renal Research Institute (MONDO), 2000 | ++ | + | ++ | + | |
| North American Pediatric Renal Trials and Collaborative Studies (NAPRTCS), 1987 transplant only, HD/PD as of 1992 | +++ | + | +++ | +++ | |
| The Renal Disease Registry (TRDR/ORN), 1981 | ++ | + | +++ | +++ | |
| US Renal Data System (USRDS), 1988 | +++ | ++ | +++ | +++ | |
| Multiregional (n = 4) | Dialysis Outcomes and Practice Patterns Study (DOPPS), 1996 | +++ | ++ | ++ | ++ |
| French Language Peritoneal Dialysis Registry (RDPLF), ≤ 1995 | +++ | +++ | +++ | +++ | |
| International Pediatric Peritoneal Dialysis Network Registry (IPPN), 2007 | + | +++ | +++ | + | |
| International Quotidian Dialysis Registry (IQDR), 2003 | ++ | + | +++ | + |
*Registry contributes to ERA-EDTA.
Full references to online registry resources are provided in Additional file 2.
Accessibility: +++(Good): Information including annual reports, publications, and aggregate data accessible via website, publicly available records, or with assistance from registry staff; ++(Moderate): Information in local language only or limited publicly available information including on website; with additional searches, basic information may be available in reports or in published research; more information may be accessible via third party collaborators (eg, registry researchers or local academics); +(Limited/unclear): very limited information available publicly or unclear.
Patient-level data: +++Available to external researchers directly or through application and review, may include usage fee; ++Conditional access, eg, via third party collaborators; +Not available to external researchers or access process unclear.
Treatment: +++ Submodality available; ++Modality available but not submodality; +Modality not available or availability unclear.
Outcome data: +++ Mortality/survival and/or hospitalization/complications data available; ++ Mortality/survival or hospitalization/complications not reported; surrogates such as laboratory result data reported; +No reported outcomes or surrogate data or availability unclear.