Collaboration Sets the Stage for an Enhanced National Registry for All Stages and Types of Kidney Disease
(November 01, 2023, New York, NY) - The National Kidney Foundation (NKF) and HHS Technology Group, LLC™ (HTG) have reached an agreement to collaborate on the KidneyCARE (Community Access to Research Equity)TM Study, the new enhanced version of the renowned NKF Patient Network®.
The KidneyCARE Study will be a nationwide longitudinal patient registry designed to enhance the lives of people living with kidney disease through innovative research, improved clinical care, and the development of cutting-edge treatments. The registry will continue to offer a secure patient portal, enabling participants to share their experiences and data, and health system partners to upload electronic health records with patient consent. Participants in the KidneyCARE Study will have access to individualized educational materials, opportunities to participate in clinical trials, and engagement with NKF's patient support programs.
"The new name defines the goal of this research study," affirmed Kevin Longino, CEO of the National Kidney Foundation, and a kidney transplant recipient. "The KidneyCARE Study will increase research advancements through the active involvement of the diverse kidney community. Data gathered from the study will help researchers gain perspective on how kidney disease affects a patient’s day-to-day life. By sharing their insights and experiences, patients from all backgrounds can contribute to the development of better treatments that are focused on what is important to patients."
Scheduled to open in the first quarter of 2024, the KidneyCARE Study will usher in a new era of kidney disease research and support, underpinned by innovative technology and advanced features. This enhanced patient registry will include privacy-preserving record linkage, state-of-the-art artificial intelligence-driven analytics, and advanced patient dashboards.
NKF will use HTG’s proven data analytics platform, Discover Your Data (DyD®), as the foundation of the patient registry, alongside the expertise of HTG’s subcontractor partners, Datavant, Inc. and Mathematica, Inc. DyD is an end-to-end platform solution that allows healthcare payers, nonprofit and public sector organizations, pharma, researchers, academic medical centers, and providers to translate big questions into deep understanding by seamlessly connecting to the nation’s largest health data ecosystem and allowing for organizations to bring their own data.
“We are proud to collaborate with NKF on this important initiative to improve kidney disease education, support, and treatment,” said Brett Furst, President, HTG. “Notably, the registry will include patient-reported outcomes, which are among the most difficult types of data to obtain but provide immense value as an indicator of the efficacy of various kidney disease treatments.”
To learn more about the KidneyCARE Study, visit kidney.org/kidneycarestudy. Attendees at Kidney Week 2023 in Philadelphia can visit NKF’s poster# INFO10-SA on November 4, 2023, from 10:00 AM to 11:00 PM for a chance to ask questions about the study.
Foundational support for the KidneyCARE Study (previously known as the NKF Patient Network) was provided through a collaboration with Bayer AG., AstraZeneca, and Novartis our platinum sponsors; Boehringer Ingelheim is a gold sponsor.
About the National Kidney Foundation
The National Kidney Foundation is revolutionizing the fight to save lives by eliminating preventable kidney disease, accelerating innovation for the dignity of the patient experience, and dismantling structural inequities in kidney care, dialysis and transplantation. For more information about NKF, visit www.kidney.org.
About HHS Technology Group, LLC
HHS Technology Group is a software and solutions company serving the needs of commercial enterprises and government agencies. HHS Technology Group delivers modular software solutions, custom development, and integration services for modernization and operation of systems supporting a wide spectrum of business and government needs. For more information about HHS Technology Group, visit www.hhstechgroup.com.
National Kidney Foundation Media Contact:
Paul McGee
Vice President, Communications and Marketing
HHS Technology Group, LLC Media Contact:
Janet Mordecai
Amendola Communications for HHS Technology Group