Data Collection

Renal registry data is used to increase awareness of the burden of chronic kidney disease (CKD) and kidney failure among health policymakers. Such data provides critical information to support the planning, delivery, and evaluation of renal services and highlights discrepancies in available kidney care to allocate resources where the need is greatest.

Renal registries have been established and collecting data in Australia and New Zealand, Europe, and North America for over 50 years. Successful renal registries are running in Latin America, Africa, and Malaysia.

Still, many countries do not have renal registries, or available data is collected voluntarily and is incomplete. The international chapter of the USRDS Annual Data Report provides a good summary of these data.

To support further establishment and development of renal registries worldwide, the ISN established a group of experts (the SharE-RR supporting group), working on the development of resources that kidney health advocates can use to establish or develop a renal registry in their countries.

In 2017, the SharE-RR team surveyed 91 organizations worldwide managing renal registries and evaluated their approaches toward collecting, managing, and reporting data on people with kidney diseases.

The analysis of the survey results is available below.

Establishing Registries for Kidney Health Advocacy    Data item collection by renal registries around the world

Over the next few years, the SharE-RR team will work to provide:

  • An open-access, global inventory of renal registries, including key facts on how they operate.
  • Useful advocacy tools and best practices for setting up renal registries.
  • Advice and hands-on guidance in setting up renal registries during workshops.

For any inquiries regarding the SharE-RR project, contact the ISN advocacy team at advocacy@theisn.org.

The SharE-RR Advisory Group:

It is likely that people with kidney disease will be disproportionately affected by the current COVID-19 pandemic, either directly by infection or indirectly by the impact of the infection on their local kidney services. It is therefore an important time to monitor the care being delivered to patients with kidney disease and use data to advocate for those at risk of adverse outcomes.

Recognising this, the ISN is leading a number of data collection initiatives on COVID-19. Learn more by following the links below. To learn more about the ISN’s work on COVID-19, please visit here.

  • Renal Registries: Through its SharE-RR network, ISN is maintaining a record of which dialysis and transplant registries have established COVID-19 surveillance systems and whether they would be willing to share lessons from materials they had already developed. The aim is to facilitate a more coordinated collection of data on COVID infection in people with kidney disease worldwide. Learn more through the ‘Renal Registries’ tab above on this webpage.
  • Coronation: The team in Cambridge, UK, has developed CORONATION – the Coronavirus multinational observational registry – a data entry portal that collects anonymised data on individual people with kidney disease and COVID-19 infection in countries. This is not intended to replace or duplicate existing data collection initiatives, where they exist, but rather to offer a solution to countries without out such initiatives. Reporting clinicians will need to register and confirm that local permissions to submit data are in place, though these should be minimal given the anonymous nature of the data. For more information see https://coronation-registry.org/ or email add-tr.coronation@nhs.net.
  • ISN-DOPPS: In collaboration with the DOPPS Program team at Arbor Research Collaborative for Health, Michigan, USA, ISN is also conducting a ‘practice patterns’ survey of the impact of COVID-19 on hemodialysis and peritoneal dialysis programs around the world. The surveys will be offered to random samples of ~20 dialysis facilities in all countries via the ten ISN regional boards. Countries currently active in DOPPS will not need to repeat the survey, but their data will be combined with the other countries to produce a global picture. For more information please contact triva@theisn.org.

The 0by25 Initiative has been gathering data through various projects over the last 5 years in order to demonstrate the global burden of AKI, especially in low and middle-income countries. This data is used to better understand AKI’s prevalence and to improve diagnostic and treatment methods.

Learn more about these projects and their data collection here.