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To create a world without kidney diseases, the ASN Alliance for Kidney Health elevates care by educating and informing, driving breakthroughs and innovation, and advocating for policies that create transformative changes in kidney medicine throughout the world.

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Kidney Week

Abstract: SA-PO541

Barriers to Genetic Testing for Determining Cause of Kidney Disease Among Healthcare Providers

Session Information

  • Genetic Diseases: Diagnosis
    November 05, 2022 | Location: Exhibit Hall, Orange County Convention Center‚ West Building
    Abstract Time: 10:00 AM - 12:00 PM

Category: Genetic Diseases of the Kidneys

  • 1102 Genetic Diseases of the Kidneys: Non-Cystic


  • Spigler, Michael, American Kidney Fund, Rockville, Maryland, United States
  • Collins, Jemetra, American Kidney Fund, Rockville, Maryland, United States
  • Paris, Melanie, American Kidney Fund, Rockville, Maryland, United States
  • Woolley, Ryan, American Kidney Fund, Rockville, Maryland, United States

Studies estimate between 5 and 10 percent of cases of kidney disease have an unknown etiology, and that a subset of these unknown designations may be attributable to genetic conditions. Identifying the cause of patients' chronic kidney disease (CKD) is important for informing tailored treatment plans to mitigate or slow disease progression. Genetic testing can also inform patients of any genetic based susceptibility for family members, helps to identify appropriate clinical trials for the advancement of treatment, and remove the feeling of blame for the disease. To identify opportunities for addressing barriers around CKD diagnosis and determining CKD cause, the American Kidney Fund conducted a survey of US-based healthcare providers (HCPs) who treat CKD patients.


An online survey was fielded between January 14-25, 2022, to 300 US-based HCPs, including 105 primary care providers (PCPs), 81 nurse practitioners/physician assistants (NP/PAs), 83 nephrologists, and 31 kidney transplant surgeons who treated 20 or more CKD patients in the previous month.


HCPs reported using genetic testing in an average of 8% of their patients with suspected CKD and 25% have never used genetic testing for determining CKD cause. Among those who use genetic testing less frequently (n=198), 50% were not very familiar with genetic testing for kidney disease. PCPs, NPs, and PAs were most likely to see patient out-of-pocket costs (73% and 70%, respectively) and connecting patients with a genetic counselor (57%, and 44%, respectively) as barriers to genetic testing compared to other HCPs. Lastly, after learning more about genetic testing, providers reported an 18% increased likelihood to use it to determine primary cause of CKD.


Genetic testing is not widely used among HCPs for determining cause of kidney disease. Cost and coverage, as well as connecting with a genetic counselor appear to be the most challenging aspects of utilizing genetic testing. Additionally, these results demonstrate a notable increase in HCPs likelihood to use genetic testing once presented with the benefits of a definitive diagnosis. With these findings, stakeholders should continue to raise awareness of genetic testing benefits among HCPs and identify policies to address the challenges shared across the kidney community.


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