American Kidney Fund Hosts Sixth Annual National Summit on Unknown Causes of Kidney Disease

Strategic Insights -

Health and industry leaders, patient advocates, and experts in the field of kidney disease gathered in Washington, D.C. for the sixth annual national summit on Unknown Causes of Kidney Disease (UCKD), hosted by the American Kidney Fund (AKF). The event focused on addressing the problem of undiagnosed or misdiagnosed kidney disease, with a particular emphasis on rural and community outreach and multidisciplinary healthcare. The UCKD Project, launched in 2020, aims to improve understanding of how undiagnosed kidney disease or misdiagnosed causes of kidney disease impact patient care and outcomes.

Key Takeaways:

  • The AKF's UCKD Project seeks to improve understanding of how undiagnosed kidney disease or misdiagnosed causes of kidney disease impact patient care and outcomes, with a focus on rural and community outreach and multidisciplinary healthcare.
  • Diabetes is the leading cause of chronic kidney disease (CKD), affecting 1 in 7 American adults, but inherited kidney diseases are also a leading cause of early CKD.
  • An estimated 15% of people with kidney disease do not know the cause, according to an AKF survey of healthcare professionals.
  • The UCKD Project works to improve access to biopsies, genetic testing, and genetic counseling for people with kidney disease to facilitate clear and accurate diagnoses.
  • AKF creates and disseminates educational materials for healthcare professionals to raise awareness of the role genetic testing plays in achieving accurate diagnoses.
  • The Know Your Kidneys/Know Your Cause/Know Your Plan(r) program has been expanded to provide accessible resources and support systems for patients seeking and understanding a kidney disease diagnosis.
  • The summit featured a panel of advocates sharing their experiences with kidney disease, community-based nephrologists discussing barriers to diagnosis and referral, and updates from the UCKD Project's workgroups focusing on public policy and patient care.
  • Matthias Kretzler, M.D., a keynote speaker, discussed innovation in glomerular disease research and novel therapeutic approaches to improve diagnosis and treatment for patients with misdiagnosed or undiagnosed conditions.

Statistics:

  • 1 in 7 American adults suffer from chronic kidney disease (CKD).
  • 15% of people with kidney disease do not know the cause.
  • The AKF has expanded its educational resources for healthcare professionals and patients as part of its Know Your Kidneys/Know Your Cause/Know Your Plan(r) program.
  • The UCKD Project has increased its capacity to reach healthcare professionals working in underserved communities.

Sources:

  • American Kidney Fund
  • Novartis Pharmaceutical Corporation
  • Travere Therapeutics, Inc.
  • Boehringer Ingelheim
  • Otsuka America Pharmaceutical, Inc.
  • Vertex Pharmaceuticals Inc.
  • Alexion Pharmaceuticals, Inc.
  • Natera
  • Novo Nordisk A/S
  • Sanofi
  • Arkana Laboratories
  • Matthias Kretzler, M.D.