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Registry data can be used to improve awareness about the burden of chronic kidney disease (CKD) and end-stage kidney disease (ESKD) amongst health policy makers and funders through initiatives such as the Global Burden of Disease project. Such data can also provide critical information to support the planning, delivery and evaluation of renal services, highlighting discrepancies in providing services within and between countries and informing about the allocation of resources and planning of services. Beyond advocacy and service planning, registry data can aid in identifying the most important causes of renal disease in different countries and thereby guide efforts to prevent, detect and treat the earlier stages of CKD.

Renal registries have collected data on ESKD treatment rates in Australia/New Zealand, Europe and North America for up to 50 years. There are also very successful renal registries in South and Latin America, Africa and Malaysia. Many low- and middle-income countries (and some high-income countries) do not have renal registries. If they do they collect data, it is on an incomplete, voluntary basis and at an aggregate level. The international chapter of USRDS Annual Data Report provides a readily accessible summary of these data.

The aim of this project is to establish a resource available to kidney health advocates in countries wishing to establish or develop a renal registry to support advocacy, quality assurance and research.

Survey results

A table summarizing the results of a 'methodological' survey of renal registries, i.e. aimed at what information they collect, how they collect it, the databases they use, etc.

We are currently drafting this survey and will be administering it to our registry contacts around the world.

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