Data Collection

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. This 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:

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. While there was lots of interest in collecting data, few registries were yet doing so – see map below. If you are aware of any other initiatives collecting data on COVID-19 positive people with kidney disease – chronic kidney disease, acute kidney injury or renal replacement therapy – please send details to triva@theisn.org.

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.

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.



Renal registries collecting data on COVID-19, by regional board:

Global Operations Center

Avenue des Arts 1-2
1210 Brussels, Belgium
Tel: +32 2 808 04 20
Fax: +32 2 808 4454
Email contact

               

Americas Operations Center

340 North Avenue 3rd Floor
Cranford, NJ 07016-2496, United States
Tel: +1 567 248 9703
Fax: +1 908 272 7101
Email contact