“What I have learned more than anything else, is that if you get talented and committed people from different backgrounds together, then wonderful and impactful things just seem to happen.” Prabir Roy-Chaudhury, MD, PhD, FASN, ASN Co-Chair for the Kidney Health Initiative

KHI is a public private partnership with the US Food and Drug Administration whose mission is to foster the development of new therapies to improve the lives of people living with kidney diseases. KHI has completed several projects this year, selected a new American Society of Nephrology (ASN) Co-Chair, and released a technology roadmap to outline opportunities for innovative alternatives to renal replacement therapy (RRT). Below are six highlights from the past year.

Learn more about KHI in the 2018 Annual Review or at www.kidneyhealthinitiative.org .

Outcome Measures for Lupus Nephritis Identified

Approximately 1.5 million Americans have systemic lupus erythematosus, and up to 60% of those patients may develop lupus nephritis, an inflammation of the kidney that can lead to chronic kidney disease (CKD) or end-stage renal disease (ESRD). Unfortunately, no well-defined endpoints exist for lupus nephritis. Brad Rovin, MD, FACP, FASN, from the Ohio State University chaired a workgroup that took on this challenge in partnership with the Lupus Nephritis Trial Network. Together, they identified a core set of outcome measures, biomarkers, model for surrogate endpoints, and clearly defined terms that should be incorporated into all future lupus nephritis trials.

Leadership Transition and New ASN Co-Chair Identified

Prabir Roy-Chaudhury, MD, PhD, FASN, wrote in his final article for Kidney News as the ASN Co-Chair for KHI about his thoughts on the past and future of the initiative. Dr. Roy-Chaudhury will complete his tenure on December 31 after six years leading the initiative. ASN announced the appointment of Raymond C. Harris, MD, FASN, to succeed him on January 1, 2019. Dr. Harris is a former ASN President and the current director of the Vanderbilt Center for Kidney Disease.

Renal Replacement Therapy (RRT) Roadmap Released

At ASN Kidney Week 2018, Joseph V. Bonventre, MD, PhD, FASN, announced the release of the Technology Roadmap for Innovative Alternatives to Renal Replacement Therapy. The unique document represents a commitment to patients from the kidney community to change the dialysis status quo. This KHI signature initiative describes the solution strategies and research pathways for developing alternative RRT to improve the quality of life of people living with kidney diseases. The document serves as a technical construct for the KidneyX Redesign Dialysis prize competition.

Largest Stakeholders Meeting Held in Washington DC

Pamela Duquette, a member of the KHI Patient & Family Partnership Council (PFPC), communicated during her keynote address at the Sixth Annual KHI Stakeholders Meeting that there has not been enough progress in kidney innovation. This year’s annual meeting was built around the theme of “Patients at the Center” and attracted the largest attendance yet for the annual meeting. A record 177 people from across the kidney community came to hear about encouraging advancements in kidney care innovation and to be reminded of the urgency patients have for innovation. Each session included a patient speaker.  Topics included diabetic kidney disease, progress in developing RRT alternatives, and presentations from stakeholders within the federal government on the impact of collaboration. The Seventh Annual KHI Stakeholders Meeting will be held May 29-30, 2019, in Washington, DC. Learn more and save the date here .

Project completed on alleviating symptoms for dialysis patients

Despite the priority that patients put on symptom alleviation, there has been little research into improving patient symptoms and minimal innovation in symptom management. Jennifer E. Flythe, MD, MPH, FASN, of the University of North Carolina Kidney Center; and Rajnish Mehrotra, MD, FASN, of the University of Washington, co-chaired a workgroup addressing this issue . Their workgroup produced two white papers in the Clinical Journal of the American Society of Nephrology addressing this issue. The first paper prioritized symptoms for the development of therapeutic interventions and the second identified near term actionable research goals for the prioritized physical symptoms of insomnia, muscle cramps, and fatigue.

KHI Patient & Family Partnership Council (PFPC) Supports KHI Member and Federal Agencies in the Quest to Develop Innovative Therapies

The KHI PFPC, under the leadership of Chair David White and Vice Chair Kevin Fowler, engage in activities that reinforce the importance of including the voice of patients and care partners in the development of new products. The KHI PFPC participated in a meeting with Department of Health and Human Services Secretary Alex Azar discussing the KidneyX project. In an effort to communicate about its activities, the KHI PFPC launched a quarterly newsletter for KHI members edited by Richard Fissel, all editions of the newsletter are available online.