The Sharing Expertise to Support the set-up of Renal Registries (SharE-RR) initiative develops resources to help establish or develop renal registries in emerging countries; among the tools available is an open-access global inventory of renal registries and how they operate, a list of experts to provide advice, and workshops covering a range of topics.
The availability of these resources is important, as many countries currently lack or possess incomplete renal registry data. 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. Registry data identifies the highest causes of kidney disease in a region to inform the prevention, detection, and early treatment of chronic kidney disease (CKD), which in parallel can be used as fundamental instruments to carry out evidence-based advocacy activities.
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.
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.
SharE-RR Workshop Program Converted to Successful Webinar Series
Due to the COVID-19 pandemic, the SharE-RR (SHARing Expertise to support the set-up of Renal Registries) workshop, scheduled to take place at the World Congress of Nephrology 2020, was unable to go ahead as planned. The program, developed by the SharE-RR advisory group to share knowledge and experience in establishing renal registries, was re-worked from a...
For any inquiries regarding the SharE-RR project, contact the ISN research team at research@theisn.org.
The SharE-RR Advisory Group can be found here