Press release

American Kidney Fund Survey Underscores Need to Expand Testing for Chronic Kidney Disease and Increase Awareness of Rare Kidney Diseases

As a part of its Unknown Causes of Kidney Disease (UCKD) Project, AKF surveyed health care providers to understand opportunities and barriers in diagnosing chronic kidney disease

ROCKVILLE, Md. (April 7, 2022) – The American Kidney Fund (AKF) today released survey findings that provide new insights on the level of awareness among health care providers about less common causes of kidney damage and their approaches toward diagnosing and treating chronic kidney disease (CKD). The survey, part of AKF's ongoing work with its Unknown Causes of Kidney Disease (UCKD) Project, examines the barriers and opportunities among health care providers to provide patients with a timely kidney disease diagnosis that identifies the cause of their kidney damage.

Kidney disease is growing at an alarming rate, affecting 37 million Americans, and nearly 810,000 people in the U.S. are living with kidney failure, which is most often caused by diabetes and/or high blood pressure. About 5% of kidney failure cases are attributed to unknown causes, according to the U.S. Renal Data System. In AKF's survey, health care providers said they estimated 15% of their patients have kidney disease with no known cause.

The UCKD Project, which kicked off in late 2020, seeks to improve understanding of how undiagnosed or misdiagnosed causes of kidney disease directly impact patient care and outcomes.

"What we learned through this survey was enlightening and very much reinforces why the American Kidney Fund has taken action to improve diagnosis and treatment of kidney disease," said LaVarne A. Burton, President and CEO of AKF. "Knowing the underlying cause of chronic disease is key to receiving effective, timely treatment and preventing disease progression. With these findings, we are better equipped to work together with stakeholders to address the challenges shared across the kidney community."

Kidney Disease Diagnosis

Though the kidney community believes primary care teams play a critical role in prevention and early diagnosis of chronic kidney disease (CKD), only 5 in 10 primary care physicians (55%) and 3 in 10 nurse practitioners/physician assistants (36%) report being extremely involved in their patients' CKD diagnosis, while 8 in 10 nephrologists (84%) report being extremely involved.

However, this isn't for lack of wanting to care for their patients – primary care physicians and nurse practitioners/physician assistants face many barriers when diagnosing patients' CKD, including challenges with complicated cases and access to specialists and testing. In fact, health care providers report diagnosing and treating CKD is significantly more challenging when it's notassociated with the common causes of Type 2 diabetes and hypertension.

Approaches to Diagnose Cause of Kidney Disease

The survey also found that for most health care providers, complete metabolic panel (CMP), basic metabolic panel (BMP) or estimated glomerular filtration rate (eGFR) are typical approaches to diagnose and determine the cause of CKD.

Nephrologists (29%) and transplant surgeons (23%) are more likely to report that genetic testing helps with differential and definitive CKD diagnosis and cause, especially to establish polycystic kidney disease (PKD), a genetic disorder that causes cysts to grow in the kidneys and disrupt function.

"As the data show, genetic testing at the appropriate stage for patients who do not have a clear diagnosis is one option for reaching a clearer diagnosis. Genetic testing for kidney disease has a number of benefits in addition to identifying the cause of disease, including helping to predict its progression, informing tailored treatment interventions, educating family members who may also be at risk and potentially providing opportunities to enroll in clinical trials," continued Burton. "This could be life-changing for many — including the 14% of kidney failure patients AKF serves who report not knowing the cause of their disease."

The Future of Diagnosing Kidney Disease

Most health care providers desire more information about genetic testing and clearer diagnostic guidelines to support their patients with CKD. They also perceive that genetic testing is preferable to biopsy (55%) and that patients will be more willing to undergo genetic testing compared to biopsy (44%).

However, within our current health care system, health care providers report many barriers with genetic testing. When asked, top barriers health care providers identified as extremely challenging were:

  • Patient out of pocket costs (66%)
  • Connecting patients with a genetic counselor (48%)
  • Ordering genetic testing for primary cause of kidney disease (45%)

"The findings of this survey related to genetic testing, particularly among those health care providers who do not specialize in renal disease, demonstrate that we must lay the groundwork to increase familiarity with genetic testing and rare kidney diseases," said Silas Norman, MD, MPH, co-medical director of Kidney and Pancreas Transplantation, University of Michigan and chair-elect of AKF's Board of Trustees. "While it's clearly established that the majority of chronic kidney disease in the U.S. is caused by diabetes and high blood pressure, we can do more to raise awareness of diagnostics available to catch CKD earlier and ensure that patients are receiving treatment that will help them slow the progression of CKD."

AKF's UCKD Project is actively working across four areas that are critical to improving diagnosis and treatment of kidney disease: improving access to genetic testing for people with kidney disease, developing national standards for genetic testing, expanding provider education and educating patients about kidney disease testing.

Specifically, AKF is developing continuing medical education for health care providers to better understand genetic testing options in renal disease and to help primary care physicians make an adequate and timely referral to a nephrologist. AKF is advocating for federal legislation that would improve access to genetic counselors and shine a spotlight on rare kidney disease. AKF is also working to develop and implement a disease classification code to help provide data to support the utilization of genetic testing in kidney disease and create a strategy to achieve universal kidney screenings in yearly physicals. 

The UCKD Project is supported by Title Sponsor Sanofi, Leadership Sponsors Travere Therapeutics and Vertex Pharmaceuticals Inc. and Champion Sponsors Alexion Pharmaceuticals, Inc.; Natera; and Otsuka America Pharmaceutical, Inc.


The American Kidney Fund's Unknown Causes of Kidney Disease (UCKD) survey was conducted by InCrowd — real-time insights pioneer and an Apollo Intelligence company — -among primary care providers, nephrologists, physician assistants, nurse practitioners and transplant surgeons who work in a variety of practice settings in the United States. All survey respondents had treated at least 20 people with chronic kidney disease in the prior month. The survey was fielded Jan. 14-Jan. 25, 2022, and the data presented is based on 300 responses.

About the American Kidney Fund

The American Kidney Fund (AKF) fights kidney disease on all fronts as the nation’s leading kidney nonprofit. AKF works on behalf of the 37 million Americans living with kidney disease, and the millions more at risk, with an unmatched scope of programs that support people wherever they are in their fight against kidney disease—from prevention through transplant. With programs that address early detection, disease management, financial assistance, clinical research, innovation and advocacy, no kidney organization impacts more lives than AKF. One of the nation’s top-rated nonprofits, AKF invests 97 cents of every donated dollar in programs, earning the highest 4-Star rating from Charity Navigator for 20 years in a row as well as the Platinum Seal of Transparency from Candid, formerly GuideStar.

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