NKF and Nephrology Experts Looking to Advance CKD Research

More Federal Funding Urgently Needed to Address Millions Affected by Deadly Illness

October 7, 2021, New York, NY— The National Kidney Foundation (NKF) released today a research roadmap that, if funded by Congress, would quickly accelerate innovations in treatment and increase understanding of kidney disease.

Kidney disease is growing in the United States so much so that now 1 in 3 adults are at risk, yet the pace of funding, research, and innovation in therapies is not sufficient to tackle the illness and lags far behind research for other diseases. In fact, many treatment options for those with the most advanced stage of chronic kidney disease (CKD) haven’t changed in 40 years.

Today’s report maps a strategy to accelerate scientific discovery and address the most vexing challenges in kidney disease, especially the challenges posed by healthcare inequity. The report calls on Congress to fully fund research in preclinical science, genetics, health equity, implementation science, and other priorities.

To craft the roadmap, NKF convened nephrology leaders from prominent U.S. academic institutions, experts from the pharmaceutical industry, individuals with CKD and their care partners, and living kidney donors to identify opportunities and priorities for preclinical and clinical kidney-related research and present the findings to stakeholders, policymakers, and federal funders.

“We urge Congress and the Administration to significantly increase its investment in CKD research,” said Holly Kramer, MD, MPH, co-author, NKF Board member and immediate past President, and Professor of Public Health Sciences and Medicine, Division of Nephrology and Hypertension Loyola University Chicago. “Investment in research saves lives as demonstrated by the decrease in mortality for heart disease and cancer over the past 20 years due to research. Research can advance knowledge on how and why kidney disease starts and progresses and can identify better treatments. Dialysis should not be the only solution to a disease that affects so many people, especially those from under-represented groups.”

An estimated 37 million adults have CKD but 90% are unaware they even have it. Our aging population and our nation’s obesity epidemic, along with increased prevalence of type 2 diabetes will increase the risk of CKD and kidney failure.

In addition to its toll on patients and families, CKD threatens the financial sustainability of the Medicare program. In FY 2020, Medicare spent $130 billion on patients with a CKD diagnosis while the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) spent only $700 million on CKD research. Despite the prevalence and impact of CKD on patients, families, Medicare, and other parts of our healthcare system, federal support for CKD research is wholly inadequate. This results in lost opportunities for research breakthroughs that can lead to new treatments to slow disease incidence and progression, and to address disparities through greater utilization of proven therapies.

“People of color are underrepresented in kidney disease research, yet they are the majority of people affected by kidney disease,” said Nichole Jefferson, a kidney patient advocate from Dallas, Texas. “Improved research and clinical trials that include diverse people will help us develop better treatment options to benefit patients affected by kidney disease.”

“Increased investment in kidney disease will save lives and reduce health disparities,” added Dr. Kramer. “There are too many people suffering from this deadly disease and the costs are not sustainable. Policy makers must act now.”

Learn more about the research roadmap during a virtually live event, “Kidney Disease and the Road to Saving Lives” with The Hill on October 13th at 1PM ETThe Hill will gather policymakers, physicians, and patient advocates for a conversation on the fight against chronic kidney disease and how we can improve diagnosis, prognosis, and treatment options. 

The research roadmap was published today in the American Journal of Kidney Diseases

Recommendations At a Glance:

  • Prioritize data science
    • Establish a nationwide integrated platform for kidney research in which datasets can be securely shared across institutions and bioinformatics support can be facilitated.
    • Establish federal funding opportunities to train, attract, and support young researchers and junior faculty members who desire training in bioinformatics in the field of kidney health and disease.
  • Use genetic tools in defining kidney disease mechanism and identify therapeutic targets
    • Increase investment in genetic research on racial/ethnic minorities to better understand genetic determinants of health across populations.
    • Develop polygenic risk scores that can have clinical and research utility across U.S. diverse populations.
    • Translate genetic discoveries into disease-causing genes, cell types and mechanisms.
    • Create a human gene regulatory map to comprehensively connect non-coding variation and genes.
    • Comprehensively catalog cellular programs to map coordinated changes in gene expression across cell types and states including across different types of kidney disease, CKD stages, sex, races, and ethnicities.
  • Develop better models of human disease
    • Develop humanized animal models that more closely mimic human disease for the study of kidney disease-causing variants and therapeutic approaches.
    • Enhance reproducibility and functional characterization of kidney organoids derived from patient cells to study the effects of genetic variability, decode the causal disease mechanisms, and evaluate the efficacy of potential therapeutics on human kidney disease models in a dish.
    • Accelerate the development of in vivo imaging technologies to monitor molecular processes associated with kidney disease progression (e.g., fibrosis).
  • Develop cell-specific drug delivery systems and gene editing
    • Develop targeted systems for the delivery of therapeutic compounds to specific kidney compartments or cell types.
    • Accelerate the implementation of gene editing and gene therapy for the treatment of kidney diseases in vivo.
  • Clinical trials
    • Develop and sustain clinical trial consortiums that can recruit patients with kidney disease to ensure adequate sample size to assess kidney outcomes and increase the enrollment of under-represented populations.
    • Encourage use of novel designs in clinical trials to enhance the recruitment and retention of under-represented populations, which will enhance the generalizability of study findings.
    • Support outreach initiatives to promote an improved understanding of the benefits of clinical research participation.
    • Complete clinical trials that test interventions to improve patient quality of life and address patient-reported outcomes.
    • Encourage inclusion of persons with CKD in clinical trials of treatments for non-kidney diseases.
  • Health disparities
    • Examine the delivery of evidenced-based care for all CKD stages, especially in under-represented and underserved populations.
    • Expand support for a root-cause analysis approach to disparities, including causes, detection, and management of CKD for underserved populations. 
    • Develop research teams that engage with community organizations to develop and implement interventions which halt or delay development and progression of kidney disease.
    • Continue support of observational studies of kidney disease measures and outcomes
  • Implementation Science: Use What We Know
    • Identify effective strategies to increase implementation of proven therapies to slow kidney disease incidence and progression, especially in high-risk, underrepresented populations.
    • Identify effective practice improvement strategies in large and small health systems to reduce CKD incidence and progression.  

Kidney Disease Facts

In the United States, 37 million adults are estimated to have chronic kidney disease (CKD)—and approximately 90 percent don’t know they have it.  1 in 3 adults in the U.S. is at risk for chronic kidney disease.  Risk factors for kidney disease include: diabeteshigh blood pressureheart diseaseobesity, and family history. People who are Black or African American, Hispanic or Latino, American Indian or Alaska Native, Asian American, or Native Hawaiian or Other Pacific Islander are at increased risk for developing the disease. Black or African American people are almost 4 times more likely than Whites to have kidney failure. Hispanic or Latino people are 1.3 times more likely than non-Hispanic or non-Latino people to have kidney failure.

About the National Kidney Foundation

The National Kidney Foundation (NKF) is the largest, most comprehensive, and longstanding patient-centric organization dedicated to the awareness, prevention, and treatment of kidney disease in the U.S. For more information about NKF, visit www.kidney.org.