STRATEGIES FOR SUCCESS: YOUR COMPREHENSIVE TOOLKIT FOR ESTABLISHING A RENAL REGISTRY
Introducing the ISN-SharE-RR Toolkit
For decades, renal registries around the world have provided data for service planning, quality assurance, advocacy, and research at regional, national, and international levels. They have informed public health and kidney disease communities, Ministries of Health and government officials, and society in general about the state of global kidney health.
However, establishing and maintaining a renal registry requires considerable resources and infrastructure. Consequently, while they exist in many high-income countries, they are often absent in middle- and low-income countries, where they are most needed.
This toolkit is for nephrologists, public health officials, and others interested in establishing a renal registry in their country.
Although traditionally, “renal registries” have primarily focused on gathering data on dialysis or kidney replacement therapy, we have designed this toolkit to offer more general guidance. The underlying principles outlined in this toolkit apply to registries on dialysis, transplantation, acute kidney injury, chronic kidney disease, and various types of kidney disease.
The toolkit is a step-by-step guide taking future registry leaders from recognizing the need for a registry to successfully establishing and maintaining a sustainable renal registry.
This toolkit does not cover all aspects of registry design in detail. These have already been covered for high-income settings in two detailed and systematically produced guidance documents – one from the Agency for Healthcare Research and Quality (AHRQ) in the US and one from the Patient Registries Initiative (PARENT) group in Europe.
This ISN SharE-RR Toolkit provides a high-level overview of what to consider when establishing registries for monitoring kidney health and adaptations that recognize the different resources and infrastructures in low- and middle-income countries.
For those wishing to establish a renal registry, we highly recommend referring to the material linked within each step, which will direct you to the corresponding sections in the AHRQ and PARENT documents. A growing repository of valuable tools, templates, exemplars, interactive maps, methodological papers, and recorded talks are also available on the SharE-RR website.
We hope you find this toolkit useful!
The SharE-RR Advisory Group
The SharE-RR Advisory Group Members:
Fergus Caskey | University of Bristol, UK
Maria Pippias | University of Bristol, UK
Stephen McDonald | Australia and New Zealand Dialysis and Transplant Registry
Kitty Jager | European Renal Association Registry
Razeen Davids | South African Renal Registry and African Association of Nephrology Renal Registry
Carlota González Bedat | Latin American Dialysis & Renal Transplantation Registry
Guillermo Rosa Diez | Latin American Dialysis & Renal Transplantation Registry
Ikuto Masakane | Japanese Society for Dialysis Therapy Renal Data Registry
Norio Hanafusa | Japanese Society for Dialysis Therapy Renal Data Registry
James Wetmore | United States Renal Data System
The WHO Collaboration Working Group on the SharE-RR Toolkit members:
Sabine Karam, Anna Francis, Elliot Koranteng Tannor, Vivek Kumar, Rajitha Abeysekera
We have created a checklist of the steps required in establishing a renal registry. We recommend you spend time completing this checklist in preparation for developing your registry.