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2024

CDRG Re-Awarded United States Renal Data System (USRDS) Federal Contract

Minneapolis – March 14, 2024 – The Chronic Disease Research Group (CDRG) of the Hennepin Healthcare Research Institute (HHRI) has been selected to continue administering the United States Renal Data System (USRDS) federal contract. The USRDS is a national registry that collects, analyzes, and distributes information about chronic kidney disease (CKD) and end-stage renal disease (ESRD) in the United States. This will be the second consecutive term that CDRG holds the contract.

“We’re thrilled to continue this work. Our goals are to provide data that is timely, of high quality, and accessible to all stakeholders,” says Kirsten Johansen, MD, Director of the USRDS, Director of the Division of Nephrology at Hennepin Healthcare HCMC, Co-Director of CDRG, and Professor of Medicine at the University of Minnesota. “This will be an exciting time to monitor the effects of new treatments and new payment models in kidney disease. Data collected and disseminated through the USRDS about kidney disease in the U.S., its treatment, and its impact will be used by patients, their doctors, kidney researchers, and the federal government to learn how to improve the care we provide for this devastating condition.”

USRDS collaborates with members of the Centers for Medicare & Medicaid Services (CMS), the United Network for Organ Sharing (UNOS), and the ESRD networks, sharing datasets and actively working to improve the accuracy of information on patients with ESRD.

CDRG was the federal contractor for the USRDS from 1999-2014, and has been again from 2019-2024. The division is also currently the federal contractor for the Scientific Registry of Transplant Recipients (SRTR). In addition, CDRG has received international recognition for its analyses of chronic disease states, including CKD, cardiovascular disease, and diabetes.

CDRG’s parent organization, HHRI, is a non-profit academic research foundation headquartered in Minneapolis, MN. In addition to Dr. Johansen, many members of the team who will work on the USRDS are also affiliated with the University of Minnesota Medical School.

More information about this contract will become available on CDRG’s website, as well as on its social media platforms Twitter and LinkedIn.

One hundred percent of the funding for this study is supported by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) of the National Institutes of Health (NIH) under Award Number 75N94024C00001. The content is solely the responsibility of the authors and does not necessarily represent the official views of or imply endorsement by the NIH.

Kirsten L. Johansen, MD (center), USRDS Director, will lead an NIH-funded nationwide effort on kidney disease surveillance, assisted by USRDS Deputy Director James B. Wetmore, MD, MS (left) and David T. Gilbertson, PhD (right), Project Director for the USRDS.

2023

USRDS Releases 2023 Annual Data Report

As the administrating coordinator of the United States Renal Data System (USRDS), the Chronic Disease Research Group (CDRG) has released the 2023 USRDS Annual Data Report (ADR). The report demonstrates the detrimental effects of the COVID-19 pandemic on chronic kidney disease (CKD) and end-stage renal disease (ESRD) and documents racial, ethnic, and socioeconomic treatment and outcome disparities. The data is from medical claims through 2021 and includes some ESRD-related metrics through the first half of 2022.

Highlights from the 2023 USRDS ADR:

The mortality rate was higher in 2021 than in 2020 for patients with ESRD. The hemodialysis (HD) population was hit particularly hard, to the extent that the prevalent HD population decreased in 2021 for the second year in a row. Overall, COVID-19-related mortality also increased substantially in 2021 for kidney transplant recipients.
The USRDS examined long COVID for the first time. In the first four months of availability of a new ICD-10-CM code for long COVID (October to December 2021), the incidence of long COVID diagnosis was twice as high among Medicare beneficiaries with CKD as among those without; the incidence was two and a half times as high among beneficiaries treated with dialysis; and over three times as high among kidney transplant recipients.

Other highlights:

Data on hospitalization and mortality among ESRD patients with Medicare Advantage (MA) coverage is now included. Prior to 2021, Medicare fee-for-service (FFS) beneficiaries with CKD were precluded from switching to MA plans, but those with pre-existing MA coverage were allowed to continue it. As a result, the number of ESRD patients with MA coverage was growing at the expected pace. However, with the implementation of the 21^st Century Cures Act, all Medicare beneficiaries with ESRD became eligible to enroll in MA plans beginning in the 2021 open enrollment period. As a result, MA enrollment in the prevalent ESRD population remarkably grew by about one-third in 2021 (from 18.3% in 2020 to 24.5% in 2021; ESRD Volume, figure 9.4b). MA spending for ESRD increased by a prodigious 46.4% in a single year (ESRD Volume, figure 9.1), and Medicare FFS spending decreased correspondingly. Future ADRs will track the influence of this shift on Medicare spending for patients with ESRD and should also compare outcomes among those insured under FFS and MA programs.

Racial, Ethnic, and Socioeconomic Disparities. Black and Hispanic patients were much less likely to start dialysis at home than White patients; this finding was true across all levels of neighborhood deprivation. However, Black and Hispanic patients were more likely than White patients to remain on home dialysis after one year regardless of neighborhood deprivation.

If you have any questions about the 2023 ADR, please contact USRDS.

Posted: 11/1/2023

2021

The Impact of COVID-19 on People with Kidney Failure
Study reveals high rates of hospitalizations and deaths among patients undergoing dialysis or living with kidney transplants.

This press release was written by the American Society of Nephrology (ASN)

Highlights

Among patients undergoing dialysis, the rate of COVID-19 hospitalizations peaked between March 22 and April 25, and it was 40-times higher than the rate in the general population.
Compared before the COVID-19 pandemic, the risks of dying from any cause were 17% and 30% higher during the second quarter of 2020 among patients receiving dialysis and patients with kidney transplants, respectively.
COVID-19 hospitalization and death rates both exhibited racial disparities.

Washington, DC (April 8, 2021) -- A new analysis reveals that individuals with kidney failure have faced especially high hospitalization and death rates during the COVID-19 pandemic. The findings, which appear in an upcoming issue of JASN, support prioritization of these patients in COVID-19 vaccination programs.

Approximately 800,000 people receive treatment for kidney failure in the United States, either by undergoing dialysis or living with a kidney transplant. Many patients receive dialysis in healthcare facilities multiple times per week and thus have not been able to shelter in place during the COVID-19 pandemic. On the other hand, patients with a transplant take medications to prevent organ rejection and are therefore vulnerable to infection.

To examine the impact of COVID-19 in these patients, Eric D. Weinhandl, PhD, MS (Chronic Disease Research Group, a division of Hennepin Healthcare Research Institute and the Coordinating Center of the United States Renal Data System) and his colleagues analyzed data from the Centers for Medicare & Medicaid Services Renal Management Information System, before and during the COVID-19 pandemic.

The team found that among patients undergoing dialysis, the rate of COVID-19 hospitalizations peaked between March 22 and April 25. "The trajectory of the rate of COVID-19 hospitalizations among dialysis patients tracked the corresponding trajectory in the general population, but was roughly 40 times higher in magnitude," said. Dr. Weinhandl. Non-Hispanic Black and Hispanic patients had especially high hospitalization rates, while patients undergoing peritoneal dialysis at home had lower rates compared with those undergoing hemodialysis in clinics.

The risks of dying from any cause were 17% and 30% higher from March 22-July 4 among patients receiving dialysis and patients with kidney transplants, respectively, compared with rates in 2017-2019. Death rates were especially high among non-Hispanic Black, Hispanic, and Asian patients. Also, during this time, patients on dialysis were hospitalized 17% less frequently than typical for reasons other than COVID-19.

"This study suggests that the effect of the initial phase of the pandemic on both dialysis and kidney transplant patients has been profound," said Dr. Weinhandl. "With markedly higher rates of all-cause mortality in both dialysis and kidney transplant patients during the second quarter of 2020, there is now a clear rationale for prioritization of kidney failure patients in COVID-19 vaccination schedules promulgated by states."

The authors noted that the study's finding that patients undergoing peritoneal dialysis had lower rates of COVID-19 hospitalizations compared with patients undergoing hemodialysis provide additional support for the benefits of home dialysis, as the home setting offers protection from community transmission of viruses.

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Study co-authors include James B. Wetmore, MD, MS, Yi Peng, MS, Jiannong Liu, PhD, David T. Gilbertson, PhD, and Kirsten L. Johansen, MD.

Posted: 4/13/2021

NKF Presents Nephrologist Dr. Kirsten Johansen with J. Michael Lazarus Award

Minnesota’s Dr. Kirsten Johansen to be honored at 2021 Spring Clinical Meetings for dedication to kidney health

March 24, 2021—New York, NY — Each year the National Kidney Foundation (NKF) considers the work of hundreds of specialists in the field of nephrology and selects among them those who most exemplify the relentless efforts of NKF to enhance the lives of patients through action, education, and accelerating change.

NKF presents this award each year to honor Dr. J. Michael Lazarus for his major contributions to the clinical science and care of dialysis patients, and to recognize individuals whose research has yielded novel insights related to renal replacement therapy.

This year’s recipient is Kirsten L. Johansen, MD, FASN, Nephrology Division Director, Hennepin County Medical Center, Co-Director, Chronic Disease Research Group, Professor of Medicine, University of Minnesota, for her focus on physical function among patients with end-stage kidney disease and interventions to improve it, and epidemiology of kidney disease with an emphasis on racial and ethnic disparities in progression of chronic kidney disease and access to kidney transplantation.

“I am extremely honored to have even been considered for this award, no less to receive it,” Dr. Johansen said. “I am as ever before committed to making a difference to patients with kidney disease and honestly, to make sure that someday I am deserving of this recognition.”

Dr. Johansen received her medical degree from Duke University School of Medicine and completed her residency at Massachusetts General Hospital and her fellowship training at the University of California, San Francisco. She is the 11^th recipient of this top honor.

“Dr. Johansen’s research has direct impact on how we can improve the care of patients with kidney disease, to decrease the effects of debility and improve their physical function and quality of life,” said NKF President Dr. Paul Palevsky. “She is also committed to mentoring the next generation of nephrology investigators. Her ebullient personality and enthusiasm for her work impacts everyone who works with her. I am honored to present Kirsten this lectureship in Dr. Lazarus’ name.”

NKF will honor all award winners at the 2021 Spring Clinical Meetings, which will be held virtually April 6-10.

“I really enjoy attending these meetings. Being involved with the planning committee many years ago gave me a close-up view of the creativity that goes into developing the content,” Dr. Johansen said. “The Spring Clinical Meetings are consistently excellent, with presentations that integrate the latest clinical science and are timely and relevant to my practice. I also enjoy this meeting because of the attendance of trainees at the residency and fellowship levels. This is a wonderful way to introduce them to nephrology, and it makes me happy to participate in that process in any way I can.”

NKF Spring Clinical Meetings

For the past 29 years, nephrology healthcare professionals from across the country have come to NKF’s Spring Clinical Meetings to learn about the newest developments related to all aspects of nephrology practice; network with colleagues; and present their research findings. The NKF Spring Clinical Meetings are designed for meaningful change in the multidisciplinary healthcare teams’ skills, performance, and patient health outcomes. It is the only conference of its kind that focuses on translating science into practice for the entire healthcare team. This year’s Spring Clinical Meetings will be held virtually April 6-10.

NKF Professional Membership

Healthcare professionals can join NKF to receive access to tools and resources for both patients and professionals, discounts on professional education, and access to a network of thousands of individuals who treat patients with kidney disease.

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: diabetes, high blood pressure, heart disease, obesity, 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.

2020

USRDS Releases 2020 Interactive Annual Data Report

The Chronic Disease Research Group (CDRG), in partnership with the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), is proud to announce the next evolution of the United States Renal Data System (USRDS) Annual Data Report (ADR): The 2020 interactive ADR. For the first time in the history of the USRDS, the ADR is fully interactive. Through intuitive, easy-to-use navigation, website users can sort through the volume chapters, customize data representation, and download the tailored information in common data formats.

“According to the recently published Global Burden of Disease in The Lancet, chronic kidney disease (CKD) has risen to the eighth leading cause of disability-adjusted life-years in people aged 50 to 74 years,” said Kirsten L. Johansen, MD, director of the USRDS Coordinating Center in Minneapolis, Minn. “As the United States population ages, the impact of chronic kidney disease and end-stage renal disease (ESRD) on health outcomes and health care spending cannot be overstated.”

Important findings in this year’s Annual Data Report include:

A 14.9% prevalence of CKD among US adults
A death rate more than twice as high in people with versus without CKD
A 40% increase in hospitalizations with acute kidney injury from 2009 to 2018 and a persistently large disparity in acute kidney injury between Black and White patients
An increase of only 0.2% in the adjusted rate of end-stage renal disease (ESRD) incidence from 2017 to 2018
Strong growth in home dialysis use and preemptive kidney transplant
A declining ultrafiltration rate in patients undergoing hemodialysis
Lack of progress in catheter use at dialysis initiation, as well as hospitalization and readmission of dialysis patients, but a 1.5% decrease in the death rate of dialysis patients from 2017 to 2018
All-time highs in kidney transplants and graft survival among deceased donor transplants
Steadily decreasing use of prescription opioids among CKD and ESRD patients from 2009 to 2018
23.2% of Medicare fee-for-service spending in patients with CKD and ESRD and continued growth of Medicare Advantage enrollment of dialysis patients

The 2020 ADR also includes new content:

A chapter devoted to the patient experience, including end-of-life care for patients with ESRD
An unprecedented look at the impact of COVID-19 on death rates and hospitalizations in patients with ESRD, as well as the incidence of ESRD

“Compared to previous years, dialysis and kidney transplant patient mortality during the spring increased by 37% and 61%, respectively, while hospitalization for non-COVID-related reasons fell by 33%,” says Dr. Johansen. “Remarkably, the number of patients who were newly diagnosed with ESRD declined by almost 20%, illustrating the profound impact of COVID-19 on people with advanced CKD and ESRD.”

"The USRDS has been a critical system for kidney disease surveillance in the United States for more than 30 years," says Dr. Kevin C. Abbott, Director of the Kidney and Urology Epidemiology Program at NIDDK. "In tandem with the Advancing American Kidney Health initiative, this year's ADR represents the beginning of a new era, with interactive presentations of data about CKD and ESRD."

The USRDS serves the kidney community through research, analysis, and investigator-initiated research. If you have any questions about the new interactive ADR, please contact USRDS.

About the USRDS

The core purpose of the USRDS ADR is to characterize the impact of chronic kidney disease on the US population and to support research and policy initiatives designed to improve the care of individuals with kidney disease. The new report features data accumulated through 2018. Along with producing the ADR on end-stage renal disease and chronic kidney disease in the United States, the USRDS fulfills data requests, provides standard analysis files (SAFs) to researchers, produces the Researcher’s Guide to help researchers use USRDS data, and presents the results of its research at national conferences and in peer-reviewed journals. Learn more by visiting the USRDS website.

About NIDDK

NIDDK research creates knowledge about and treatments for diseases that are among the most chronic, costly, and consequential for patients, their families, and the nation. Learn more by visiting the NIDDK website.

Posted: 11/11/2020

HHRI Awarded Continuation of SRTR Contract

Minneapolis, MN (September 21, 2020) – Following a federal open competition acquisition process, the Chronic Disease Research Group (CDRG) of the Hennepin Healthcare Research Institute (HHRI) was awarded the federal contract to operate the Scientific Registry of Transplant Recipients (SRTR). Among its key functions, the SRTR evaluates the status of the nation’s solid organ transplant system and provides analytic support to the Organ Procurement and Transplantation Network (OPTN) for purposes including the formulation and evaluation of organ allocation policies in the United States.

HHRI will continue to manage the SRTR under contract with the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS). The new contract award marks the third contract term for the operation of the SRTR for HHRI, which has operated the SRTR since 2010. The new contract contains a series of optional terms that may extend the period of performance through September 2025.

HHRI is the research arm and a nonprofit subsidiary of Hennepin Healthcare System, Inc., an integrated healthcare system that includes the Hennepin County Medical Center (HCMC), a nationally recognized Level 1 Trauma Center and acute care and teaching hospital in Minneapolis, MN. HHRI is one of the largest nonprofit medical research institutions in Minnesota, ranking nationally in the top 10% of institutions receiving funding from the National Institutes of Health (NIH).

CDRG currently serves as the Coordinating Center for the United States Renal Data System (USRDS) and in the past has managed the Kidney Early Evaluation Program of the National Kidney Foundation (NKF), the North Central Donor Exchange Cooperative (a collaboration between kidney transplant centers in the Upper Midwest), the Peer Kidney Care Initiative, and the CKD (Chronic Kidney Disease) Health Evaluation Risk Information Sharing project conducted by NKF in collaboration with the Centers for Disease Control and Prevention (CDC). CDRG has also received international recognition for its analyses of chronic disease states, including chronic kidney disease, cardiovascular disease, and diabetes.

Jon J. Snyder, PhD, MS, will continue to serve as SRTR Director, Ajay K. Israni, MD, MS, as Deputy Director/Medical Director, Bertram L. Kasiske, MD, FACP, as Medical Director for Living Donation, and Ryutaro (Ryo) Hirose, MD, as Surgical Director. National Senior Staff members with organ-specific expertise and expertise in epidemiology, histocompatibility, biostatistics, economics, and computer modeling of allocation systems help complete the team. More information about SRTR can be found at www.srtr.org.

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2019

SRTR Leadership Change

Minneapolis – August 15, 2019 – Effective September 21, 2019, Bertram Kasiske, MD, FACP, will be stepping down as the Director of the Scientific Registry of Transplant Recipients (SRTR), and Jon Snyder, PhD, will assume the Director role. Dr. Kasiske has been the Director since September of 2010 and has lead SRTR through 9 successful years, overseeing improvements in program-specific and OPO-specific reporting, creation of new public and secure SRTR websites, the launch of the Living Donor Collective pilot project, publication of the SRTR/OPTN Annual Data Reports, support of all OPTN policymaking committees, and numerous scientific publications furthering the field of solid organ transplantation.

Dr. Kasiske will continue supporting SRTR with a primary focus on living donation, continuing to lead the Living Donor Collective pilot project, and Ajay Israni, MD, MS, will continue to serve as the Deputy Director of SRTR.

Dr. Snyder has been the Director of Transplant Epidemiology for SRTR since September 2010, and he began his career in the field of transplant epidemiology in 1999. He oversees the Chronic Disease Research Group’s (CDRG) research in the areas of organ, eye, and tissue donation and transplantation. CDRG currently operates SRTR under contract with the Health Resources and Services Administration (HRSA) of the US Department of Health and Human Services. Dr. Snyder’s research focuses on data analytics targeted at healing and saving lives through transplantation. In addition to his work with SRTR, Dr. Snyder serves as a Statistical Editor for the American Journal of Transplantation and as an Associate Editor for the journal Transplantation. He also serves on the Board of Directors for Donate Life America and the Organ Donation and Transplantation Alliance. Dr. Snyder holds a Master of Science in Biostatistics and a Doctor of Philosophy in Epidemiology from the University of Minnesota, where he also holds an adjunct faculty appointment in the Division of Epidemiology and Community Health, School of Public Health.

Continuing to provide excellent service to HRSA and the transplant community will remain Dr. Snyder’s primary focus as the Director of SRTR. Questions and/or comments can be directed to srtr@srtr.org.

Jon Snyder, PhD, will become the new Director of the Scientific Registry of Transplant Recipients (SRTR).

CDRG Awarded United States Renal Data System (USRDS) Federal Contract

Minneapolis – June 13, 2019 – The Chronic Disease Research Group (CDRG) of the Hennepin Healthcare Research Institute (HHRI) has been selected to administer the United States Renal Data System (USRDS) federal contract. The USRDS is a national registry that collects, analyzes, and distributes information about chronic kidney disease (CKD) and end-stage renal disease (ESRD) in the United States.

In 2016, ESRD-related costs reached $35.4 billion – 7.2% of Medicare service expenditures overall. On average, care of patients on hemodialysis (HD) costs $90,971 per person, per year, with 5-year survival of only 42%. The mortality rate for HD patients is approximately triple the mortality rate for cancer patients aged 65-74 years. These figures demonstrate the importance of monitoring and analyzing ESRD-related data.

“We’re so excited to have our team contribute to the fight against kidney disease,” says Kirsten Johansen, MD, Director of the USRDS, Director of the Division of Nephrology at Hennepin Healthcare HCMC, Co-Director of CDRG, and Professor of Medicine at the University of Minnesota, “Data collected and disseminated through the USRDS about kidney disease in the U.S., its treatment, and its impact will be used by patients, their doctors, kidney researchers, and the federal government to learn how to improve the care we provide for this devastating condition.”

CDRG was the federal contractor for the USRDS from 1999-2014 and is currently the federal contractor for the Scientific Registry of Transplant Recipients (SRTR). CDRG has also received international recognition for its analyses of chronic disease states, including chronic kidney disease, cardiovascular disease, and diabetes.

More information about this contract will become available on CDRG’s website, as well as on its social media platforms Twitter and LinkedIn.

100% of the funding for this study is supported by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) of the NIH under Award Number 75N94019C00006. The content is solely the responsibility of the authors and does not necessarily represent the official views or imply endorsement of the NIH.