A Toolkit for ISN’s registry initiative, SharE-RR

Worldwide, more than 850 million people are estimated to be living with kidney disease— chronic kidney disease (CKD), acute kidney injury/disease, or kidney failure treated with kidney replacement therapy. This burden is increasing. Between 1990 and 2017, the prevalence of CKD increased by 29% and CKD moved from being the 17th to the 12th most common cause of death. The burden is also distributed unevenly. The age-standardized disability-adjusted life years lost from CKD is 15 times higher in American Samoa, El Salvador, Federated States of Micronesia, Marshall Islands, and Mauritius than in the best performing high-income countries. Robust longitudinal data are needed to increase the awareness of the burden of CKD and kidney failure and to advocate for resources to prevent and treat kidney diseases, yet low- and middle-income countries are much less likely to have surveillance systems, such as renal registries, in place. The International Society of Nephrology (ISN) registry initiative Sharing Expertise to Support the set-up of Renal Registries (SharE-RR) was established in 2017 to address this.