Unknown Causes of Kidney Disease Project

The American Kidney Fund's (AKF) Unknown Cause of Kidney Disease Project seeks to improve understanding of how undiagnosed or misdiagnosed causes of kidney disease directly impact patient care and outcomes.

Researchers with UCKD logo

Introducing the Unknown Causes of Kidney Disease Roadmap

View the slides from the panel discussion

A variety of health and environmental conditions can lead to kidney disease and, in some cases, kidney failure. Identifying the root cause of patients' kidney disease, both early in the disease and as a life-preserving necessity, is important for making crucial treatment decisions. 

As a champion of people living with kidney disease, the American Kidney Fund (AKF) has long been engaged with stakeholders across the healthcare sector and utilizing these relationships to identify both the barriers that this patient population faces in seeking a diagnosis and the challenges that not having a clear diagnosis cause in patients' lives. AKF's Unknown Causes of Kidney Disease Project seeks to improve understanding of how undiagnosed or misdiagnosed causes of kidney disease directly impact patient care and outcomes.

AKF held the Unknown Causes of Kidney Disease Summit in December 2020, bringing together medical leaders, patient advocates, and academic and industry researchers, to identify how the kidney community can drive innovation in research, diagnosis and treatment of the underlying causes of kidney disease. Leading experts reviewed the research on the subject, heard directly from affected patients, identified barriers to progress, and developed a plan for a path forward to address this serious issue in nephrology.

After refining the key takeaways from the Summit, AKF developed a roadmap to present a path forward for improving the diagnosis of the causes of kidney disease and kidney failure. Overcoming barriers to identifying the root cause of kidney disease for currently unknown reasons, will not be accomplished quickly. However, thoughtful, dedicated collaboration among the kidney care community can result in steady progress toward expanding access to genetic testing, reducing systemic inequalities, engaging providers, and empowering patients. The solutions that AKF outlines in this roadmap, based on expert input from the Summit, and supported by educational resources and best practices for patient-provider communication, can help reduce the number of patients unaware of the origins of their kidney disease.

 

A young female doctor talking to a male patient

Latest news

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.

Thumbnail of Unknown Causes of Kidney Disease Project roadmap

Download

Unknown Causes of Kidney Disease Project roadmap

Download our roadmap which presents a path forward for improving the diagnosis of the causes of kidney disease and kidney failure. The solutions that AKF outlines in this roadmap, based on expert input from leading experts and patients, and supported by educational resources and best practices for patient-provider communication, can help reduce the number of patients unaware of the origins of their kidney disease.

Next steps for the Unknown Causes of Kidney Disease Project

AKF is committed to seeing these changes through. To accomplish this, AKF has assembled three groups of patient advocates, rare disease organizations, kidney advocacy organizations and leading medical professionals to begin the work of implementing the UCKD Roadmap's recommendations.

Each group will focus on a particular area: public policy, patient and caregiver empowerment, and healthcare professional awareness and education.

The public policy group will be focusing on ensuring equitable insurance coverage for patients seeking an accurate diagnosis, the patient and caregiver group will be focusing on creating tools to empower patients to work effectively with their providers and the healthcare professional group will be working to address knowledge gaps identified through the 2020 Summit and other methods.

On December 6, 2021, all three implementation groups will come together for a working summit to discuss key goals, current progress, anticipated barriers and next steps on how they will continue to forge ahead in pursuit of providing guidance and creating tools and resources for kidney patients who have no definitive diagnosis, as outlined in the Roadmap.

During this summit, all participants will have the opportunity to connect and provide feedback outside of the confines of their respective group.

If you or your organization is interested in partnering with AKF to accomplish these goals, please email Jemetra Collins, Director of Professional Education at jcollins@kidneyund.org.

A patient perspective

Watch Shayla's story

Shayla, a former Division I athlete and seemingly healthy young adult, was referred to a nephrologist after severely swollen feet led her doctor to conduct bloodwork. After additional testing, the nephrologist told Shayla that she would need a kidney transplant or dialysis to survive. Shayla was incredibly fortunate to receive a transplant from her twin sister, Ivy, 10 years ago. Now married and the mother of two young boys, Shayla is participating in research led by Dr. Martin Pollak, investigating genetic markers of kidney disease. She hopes to discover whether her kidney failure has genetic origins so that her sons can live healthier lives.

Title Sponsors

Leadership Sponsors

Champion Sponsors

Summit Steering Committee:

David Baron, Ph.D. PKD Science Consultant Former Chief Scientific Officer, PKD Foundation

Ali Gharavi, M.D. Chief, Division of Nephrology Member, Institute for Genomic Medicine New York-Presbyterian/ Columbia University Medical Center

Kevin Ho, M.D. Medical Director, US Medical Affairs- Rare Diseases Sanofi Genzyme

Jack Johnson Executive Director and Co-Founder Fabry Support and Information Group

Anna Köttgen, M.D., MPH Director, Institute of Genetic Epidemiology University of Freiburg, Germany

Trudy McKanna, M.S. Director, Medical Education- Transplant and Renal Genetics Natera

Silas Norman, M.D., MPH Associate Professor, University of Michigan Division of Nephrology Vice Chair of Medical Affairs Committee, American Kidney Fund

Julie Wright Nunes, M.D., MPH Associate Professor, University of Michigan Department of Internal Medicine Chair of Medical Affairs Committee, American Kidney Fund

Summit Presenters:

Dr. Ali Gharavi Chief, Division of Nephrology Member, Institute for Genomic Medicine New York-Presbyterian/ Columbia University Medical Center

Dr. Martin Pollak Chief, Division of Nephrology and Director, Pollak Lab Beth Israel Deaconess Medical Center

 

Patient/Caregiver Advocates:

Theresa Caldron

Amanda Goldstein

Shayla Harris

Deanna Nicole Hunt

Paul Rakoski

 

Summit Participants:

Alexion Pharmaceuticals, Inc. John Viel, PhD- Senior Medical Director, Nephrology

 

Alport Syndrome Foundation Kevin Schnurr- Dir. of Communications and Patient Engagement

 

American Association of Kidney Patients Richard Knight- President

 

American Nephrology Nurses Association Debra Hain, PhD APRN AGPCNP-BC FAAN FAANP FNKF- Fellow

 

American Society of Nephrology Susan Stark- Acting VP, Excellence in Patient Care Ronald Falk, MD, FASN- Past President

 

Atypical HUS Foundation David Deffenbaugh- Executive Director

 

Centers for Medicare & Medicaid Services Jesse Roach, MD- Nephrologist, Medical Officer, Center for Clinical Standards and Quality

 

Chi Eta Phi Sorority, Inc. Angela Jourdain, Dr. PH., MSN, RN, CCRN, NEA-BC - Past President Stacey Johnson, DNP, MSN, BSN, RN, CCM- Assistant Regional Director

 

Dialysis Patient Citizens Kathi Niccum, EdD- Education Director

 

IgA Nephropathy Foundation of America, Inc. Bonnie Schneider- Founder and Director

 

ICAHN School of Medicine at Mount Sinai Paolo Cravedi, MD, PhD- Principal Investigator, the TANGO Study, Cravedi Laboratory

 

International Society of Nephrology Shuchi Anand, MD, MS- Board Member, Director of the Center for Tubulointerstitial Kidney Disease at Stanford University

 

Kidney Disease: Improving Global Outcomes (KDIGO) John Davis- CEO

 

National Institute of Diabetes, Digestive and Kidney Diseases Ivonne Schulman, MD- Program Director, Division of Kidney, Urologic and Hematologic Diseases

 

National Kidney Foundation Jennifer St. Clair Russell, PhD, MSEd, MCHES- Sr. VP Education and Programs

 

National Medical Association Oliver Brooks, MD- Immediate Past President

 

National Minority Organ Transplant Education Program (MOTTEP) Clive Callender, MD- President and Founder

 

National Organization for Rare Disorders (NORD) Alicia Lawrence, LMSW- Patient Services Case Manager

 

National Society of Genetic Counselors Gillian Hooker, PhD, ScM- President

 

NephCure Kidney International Kristen Hood, MSN, RN- Director Clinical Outreach

 

Otsuka America Pharmaceutical, Inc. Charlotte Jones-Burton, MD, MS- VP, Global Clinical Development, Nephrology

 

Oxalosis & Hyperoxaluria Foundation Kim Hollander- Executive Director

 

Polycystic Kidney Disease Foundation Chris Rusconi, PhD- Chief Research Officer

 

Renal Pathology Society Jeffrey Hodgin, MD, PhD- Board of Advisors

 

Renal Physicians Association Amy Beckrich, CAE- Project Director

 

U.S. Veterans Affairs Susan Crowley, MD, MBA, FASN- National Program Director for Kidney Disease and Dialysis Deborah Hartzfeld- Lead Genetic Counselor, Genomic Medicine Service

 

University of Michigan Alan Leichtman, MD- Professor Emeritus, Department of Medicine, Division of Nephrology

 

University of Michigan Medical School Laura Heyns Mariani, MD- NEPTUNE Nephrotic Syndrome Study Network Assistant Professor, Internal Medicine/Nephrology

 

Vertex Pharmaceuticals, Inc. Ogo Egbuna, MD- Sr. Medical Director