Press release

American Kidney Fund Shares Unknown Causes of Kidney Disease Survey Results at ASN Kidney Week (Poster #SA-PO541)

AKF will present its poster "Barriers to genetic testing for determining cause of kidney disease among healthcare providers" at the American Society of Nephrology Kidney Week 2022 Annual Meeting.

ROCKVILLE, Md. (Oct. 27, 2022) – At the American Society of Nephrology (ASN) Kidney Week 2022 Annual Meeting in Orlando, the American Kidney Fund (AKF) will present its poster "Barriers to genetic testing for determining cause of kidney disease among healthcare providers," sharing the results of a health care provider survey AKF conducted earlier this year.

The survey was conducted as part of AKF's ongoing Unknown Causes of Kidney Disease (UCKD) Project, which seeks to improve understanding of how undiagnosed or misdiagnosed causes of kidney disease directly impact patient care and outcomes. Studies estimate between 5 and 10 percent of people living with kidney disease do not know the causes of their disease, and a subset of those unknown causes may be attributable to genetic conditions. Genetic testing can play an important role in identifying these unknown causes, allowing patients to receive tailored treatments to mitigate or slow disease progression.

"AKF surveyed 300 health care providers, including nephrologists, primary care providers, nurse practitioners, physician assistants and kidney transplant surgeons," said LaVarne A. Burton, AKF President and CEO. "Unfortunately, the results show that many health care providers do not take advantage of genetic testing for kidney diagnosis. However, the findings also showed that when providers better understand the role of genetic testing in CKD, they would be more likely to order these tests to determine primary cause. We hope our presentation at ASN's Annual Meeting will allow us to directly raise awareness of genetic testing benefits among health care providers."

AKF also hopes to receive input from the professional health care community about policies to address the challenges shared across the kidney community. The presentation will be a part of the poster session on Genetic Diseases: Diagnosis on Nov. 5 from 10 a.m. to 12 p.m.

The UCKD Project is made possible by support from Title Sponsors Sanofi and Novartis; Leadership Sponsors Otsuka America Pharmaceutical, Inc., Vertex Pharmaceuticals Inc. and Travere Therapeutics; and Champion Sponsors Alexion, AstraZeneca Rare Disease; and Natera.


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 nonprofit with the greatest direct impact on people with kidney disease. AKF works on behalf of 1 in 7 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. AKF fights for kidney health for all through programs that address early detection, disease management, financial assistance, clinical research, innovation and advocacy. AKF is one of the nation’s top-rated nonprofits, investing 97 cents of every donated dollar in programs, and holds the highest 4-Star rating from Charity Navigator for 21 consecutive years and the Platinum Seal of Transparency from Candid, formerly known as GuideStar. 

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