Kidney Health Initiative launches ESKD Data Standards Project
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The Kidney Health Initiative, a public-private partnership between the American Society of Nephrology, the FDA and more than 100 organizations, has launched the End-Stage Kidney Disease Data Standards Project.
Further, the Kidney Health Initiative (KHI) ESKD Data Standards provide a summary of key research considerations for measures relevant to research among patients with kidney failure receiving maintenance dialysis.
“Due to the volume and frequency of dialysis treatments, the kidney community generates and requires management of massive data sets worldwide. Despite the volume, little has been done to ensure that standardized data definition exists to ensure data is interoperable and comparable,” Mahesh Krishnan, MD, MPH, MBA, FASN, a KHI member and group vice president for research and development at DaVita, told Healio. “There has been a swell of energy across the kidney community to combine efforts and align on a data standard, including this work from Kidney Health Initiative.”
In November 2018, KHI gathered a workgroup of 12 members and support staff. The 12 members eventually dwindled to nine. KHI then asked the workgroup to define a core ESKD patient dataset using the existing ESKD Measurement Specification Manual. By December 2018, the workgroup determined volume removal, vascular access, small solute clearance, hospitalization and mortality as the top five areas for the data standards.
Experts developed data standards for ultrafiltration, single pool urea, standard weekly urea hemodialysis, weekly urea peritoneal dialysis, vascular access, hospital admission, hospital readmission and mortality rate.
The workgroup designed an outline for each data standard to create a standardized approach to specifications. The outline included the following elements: description, rationale, data source(s), required and derived data elements, calculation method, exclusions, additional desirable data elements to collect, additional considerations, acronyms and references.
Experts reviewed the drafted data standards, then KHI posted these on its website for public comment. Following final revisions, KHI posted the final ESKD data standards at: Kidney Health Initiative (KHI) | Current Projects (asn-online.org).
“Once standardized, data will become more useful for registries, clinical care, research and more,” Krishnan told Healio. “Our hope is that once research utilizes a common dataset, the pace of scientific discovery will become more rapid. This will allow for further meta-analyses, allowing deeper insights and future breakthroughs that improve the lives of patients with kidney diseases.”
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