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. 2017 Jun 7;18(1):189.
doi: 10.1186/s12882-017-0607-5.

CKD.QLD: establishment of a chronic kidney disease [CKD] registry in Queensland, Australia

Sree K Venuthurupalli  1   2   3 , Wendy E Hoy  4   5 , Helen G Healy  4   6 , Anne Cameron  4 , Robert G Fassett  4   7   8
Affiliations

CKD.QLD: establishment of a chronic kidney disease [CKD] registry in Queensland, Australia

Sree K Venuthurupalli et al. BMC Nephrol. .

Abstract

Background: Chronic kidney disease [CKD] is recognised as a global public health problem. Until recently, the majority of information informing on CKD has been generated from renal registries reporting on patients with end-stage kidney disease [ESKD] and on renal replacement therapy [RRT]. There has been a paucity of information on pre-dialysis CKD cohorts, and many issues related to these poorly described populations are unresolved. To this end, international organizations have called for CKD surveillance systems across all countries.

Description: In Australia, we have responded by developing the Chronic Kidney Disease in Queensland [CKD.QLD] with three main platforms consisting of CKD Registry, clinical trials and development of biobank. This registry which is the core component of CKD surveillance was conceptualized specifically for the pre-dialysis population in the public health system in Queensland, Australia. Recruitment started in May 2011, and to date the Registry has evolved as one of the largest CKD cohorts in the world with recruitment close to 7000 patients. The Registry has had many outcomes, including being the nidus for Australia's first National Health and Medical Research Council [NHMRC] CKD Centre of Research Excellence [CKD.CRE].

Conclusions: The Registry, with its linkage to Queensland Health datasets, is reporting, and is expected to continue generating, significant information on multiple aspects of CKD, its trajectory, management and patient outcomes. Intent of the CKD.CRE is to facilitate an expanded Registry network that has representation from health services, both public and private, across Australia.

Keywords: Chronic kidney disease; Registry; Surveillance.

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Figures

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Fig. 1
Research platforms of CKD.QLD Registry
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Fig. 2
Data linkage networks of CKD.QLD Registry
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Fig. 3
Enrolment with consent to CKD.QLD Registry [6991] Active and Inactive
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Fig. 4
Chronic Kidney Disease Centre of Research Excellence (CKD.CRE) Network
See this image and copyright information in PMC

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References

    1. Venuthurupalli SK, Hoy WE, Healy H, et al. CKD.QLD: chronic kidney disease surveillance and research in Queensland, Australia. Nephrol Dial Transplant. 2012;27(Suppl 3):139–145. doi: 10.1093/ndt/gfs258. - DOI - PMC - PubMed
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    1. WHO: Global status report on non-communicable report 2010 http://www.who.int/nmh/publications/ncd_report_full_en.pdf accessed 20 Feb 2017.
    1. The UN General Assembly. Political declaration of the high-level meeting of the General Assembly on the prevention and control of non-communicable diseases 2011. http://www.who.int/nmh/events/un_ncd_summit2011/political_declaration_en.... Accessed 5 June 2017.
    1. Annual data reports (ADR) The United States Renal Data System (USRDS) 2016 https://www.usrds.org/adr.aspx accessed 22 Feb 2017.

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