ADPKD (Autosomal Dominant Polycystic Kidney Disease)

                    CORE Kidney PKD Center of Excellence at UCLA Health

.                                                                PKD Foundation  Center of Excellence

Polycystic kidney disease (PKD) is one of the most common inherited kidney conditions, affecting individuals and often several generations of a family. The PKD Program at CORE Kidney at UCLA Health is a PKD Foundation–certified Center of Excellence, a recognition given to programs that demonstrate excellence in diagnosing, treating, educating, and researching PKD.

Our program provides comprehensive, multidisciplinary care for children and adults with PKD and their families — including both autosomal dominant PKD (ADPKD) and autosomal recessive PKD (ARPKD) — from infancy and childhood through adulthood.

Leadership

The program is led by Anjay Rastogi, MD, PhD, Professor and Clinical Chief of Nephrology at the David Geffen School of Medicine at UCLA and founder of CORE Kidney at UCLA Health. Under his leadership, the program brings together experts across UCLA Health to deliver coordinated care tailored to each patient and family.

Our team includes specialists in nephrology, genetics, cardiology, radiology and interventional radiology, hepatology, and neurosurgery. When needed, we refer patients to transplant specialists, urologic surgeons, dietitians, and psychologists well versed in PKD.

Our Approach

PKD affects more than the kidneys. It can involve the liver, heart, blood vessels, and brain, and it can shape decisions about family planning and long-term health. Our team looks at the whole person, with care plans that address kidney function and disease progression, blood pressure, symptoms such as pain, emotional well-being, and what the diagnosis means for relatives.

Services We Offer

Diagnosis and risk assessment

• Expert evaluation and confirmation of diagnosis

• Advanced kidney imaging, including kidney volume measurement to help estimate how quickly the disease may progress

• Identification of patients most likely to benefit from disease-modifying therapy

Genetics and family care

• Genetic testing and counseling for patients and at-risk family members

• Guidance on screening relatives and on family planning, including access to reproductive endocrinology

Pediatric PKD Care

PKD can show up long before adulthood. ARPKD is often diagnosed before birth or in infancy, and ADPKD can sometimes cause cysts, high blood pressure, or other findings in childhood. Our program works with pediatric nephrology at UCLA Mattel Children's Hospital to care for children and teens with PKD.

Care for children and teens

• Pediatric nephrology evaluation and long-term follow-up

• Blood pressure monitoring and management, which matters in childhood

• Kidney imaging and monitoring of growth and kidney function

• Referrals for nutrition and growth support as needed

ARPKD care

• Prenatal consultation for families when PKD is suspected before birth

• Newborn and infant care in coordination with neonatology

• Pediatric hepatology care for the liver involvement (congenital hepatic fibrosis) that often comes with ARPKD

• Pediatric dialysis and kidney transplantation when needed

Families and genetics

• Genetic counseling for parents, siblings, and extended family

• Thoughtful guidance on whether and when to screen children with a family history of ADPKD, taking into account the benefits, the limits, and the family's wishes

• Family planning support for parents who want to understand recurrence risk

Transition to adult care

• A planned, gradual move from pediatric to adult nephrology within UCLA Health

• Teaching teens to understand their condition, manage their medicines, and take an active role in their care

• Continuity, so families don't have to start over with a new team

Kidney Transplantation

Many people with PKD eventually need kidney replacement therapy. When the time is right, we refer patients to the UCLA Health Kidney Transplant Program, one of the leading programs in the nation, with transplant nephrologists and surgeons well versed in PKD. Our nephrology and transplant teams work closely together so that planning starts early and care stays continuous before and after transplant.

Planning ahead

• Early education on all kidney replacement options, including home dialysis, in-center dialysis, and transplantation

• Timely referral for transplant evaluation, ideally well before dialysis is needed

• Preemptive transplantation, which can let patients avoid dialysis altogether

• Evaluation for combined liver-kidney transplantation in selected patients with severe polycystic liver disease

Living kidney donation

• Living donor evaluation through UCLA Health's experienced living donor program

• Careful screening of relatives who want to donate, including imaging and genetic testing when needed, so that a donor does not carry PKD

• Paired kidney exchange, which helps when a willing donor isn't a compatible match

• Donor voucher opportunities, which let a donor give now on behalf of a loved one who may need a kidney in the future

Native kidney removal (nephrectomy)

In PKD, the kidneys can grow very large and cause pain, pressure, infection, or bleeding. Removing one or both kidneys (nephrectomy) may be recommended to relieve symptoms or to make room for a transplanted kidney. When needed, we refer patients to urologic and transplant surgeons well versed in PKD.

• Who may benefit: patients with severe or ongoing pain, repeated cyst infections or bleeding, kidneys large enough to affect eating, breathing, or mobility, or kidneys that leave too little room for a transplant

• Surgical approach: minimally invasive (laparoscopic or hand-assisted) surgery when possible, and open surgery when kidney size or other factors require it

• One or both kidneys: removal of one kidney or both, depending on symptoms, kidney size, and transplant plans

• Timing: coordinated with the transplant team, so removal can happen before, during, or after transplant based on each patient's needs

• Alternatives: for patients who aren't good candidates for surgery, interventional radiology procedures such as kidney artery embolization may be an option

Because the native kidneys still do some work before dialysis, decisions about nephrectomy are made carefully with the nephrology team to protect remaining kidney function.

Life after transplant

• Long-term care with transplant nephrology and the PKD team

• Continued attention to PKD-related problems outside the kidneys, including liver cysts, blood pressure, and cardiovascular health

• Pediatric transplantation through UCLA Mattel Children's Hospital for children who need it

Interventional Radiology

Interventional radiologists use imaging to guide minimally invasive procedures through a needle or small catheter, often without open surgery. For many people with PKD, these procedures can relieve symptoms, treat complications, and in some cases offer an alternative to surgery.

Treating symptomatic cysts

• Image-guided cyst aspiration and sclerotherapy for large kidney or liver cysts that cause pain or pressure

• Drainage of infected cysts that don't respond to antibiotics alone

Managing enlarged kidneys and liver

• Kidney artery embolization to shrink very large kidneys in selected patients, especially those on dialysis or who are poor candidates for surgery

• Liver artery embolization for selected patients with severe polycystic liver disease

Treating complications

• Embolization to control cyst bleeding or other kidney bleeding

• Image-guided biopsy when needed for diagnosis

Dialysis support

• Placement and maintenance of dialysis access, including catheters and procedures that keep fistulas and grafts working

• Peritoneal dialysis catheter placement for patients choosing home dialysis

Why Choose the PKD Program at UCLA Health?

• Comprehensive care from a dedicated, multidisciplinary PKD team

• Care across the lifespan, from prenatal consultation through childhood, adolescence, and adulthood

• Timely appointments, in person and by telehealth

• Seamless access to other UCLA Health specialties when needed, including oncology, gastroenterology, rheumatology, dermatology, pulmonology, and infectious diseases

• Care across UCLA Health nephrology locations, including Ronald Reagan UCLA Medical Center, UCLA Santa Monica Medical Center, and UCLA West Valley Medical Center

• Referral to one of the nation's leading kidney transplant programs, with a team well versed in PKD, offering preemptive transplantation, paired kidney exchange, and donor voucher opportunities

• Minimally invasive interventional radiology procedures to relieve symptoms and treat complications, often as an alternative to surgery

• Referrals to dietitians and psychologists well versed in PKD, plus kidney educators and peer support programs

• Opportunities to take part in clinical trials of promising new therapies

• A program that trains future healthcare leaders through mentorship and community engagement

Education and Community

We believe informed patients make the best partners in their care. Patients and families can join educational webinars and community events, the Annual Patient Summit, and the Circle of CORE Kidney Foundation — a patient-led network of people with kidney disease, caregivers, and living kidney donors. We also educate physicians and healthcare professionals on the latest advances in PKD.

Training the Next Generation: Bruin Beans Health Club

The PKD Program works closely with the Bruin Beans Health Club, an undergraduate organization dedicated to mentoring future healthcare leaders. Founded by Dr. Rastogi in 2016, Bruin Beans gives UCLA undergraduates a close look at patient-centered kidney care while giving back to the PKD community.

How Bruin Beans students support patients and families

• Volunteering at patient education events, webinars, and the Annual Patient Summit, where they help families connect with resources and with each other

• Helping create easy-to-understand educational materials about PKD, kidney health, nutrition, and genetics

• Supporting community outreach and kidney health awareness events, with a focus on underserved and underrepresented communities

• Contributing to research projects and clinical trial support under faculty supervision

What students gain

• Mentorship from physicians, researchers, and care team members in the CORE Kidney program

• Firsthand understanding of what it means to live with a chronic, inherited disease, often shared directly by patients and caregivers

• Experience in research, health education, and community service that prepares them for careers in medicine and science

Why this matters for patients

Many of today's physicians, scientists, and advocates first learned about kidney disease as students. By connecting future healthcare leaders with patients and families living with PKD, we help build a workforce that understands PKD and is committed to better care, research, and advocacy for years to come. Patients and families who want to share their experiences with students are always welcome to let our team know.

Who Should Contact Us

• Adults and children diagnosed with PKD or suspected of having it

• Expectant parents whose baby may have PKD based on prenatal imaging

• Family members of someone with PKD who want screening or genetic counseling

• Patients seeking a second opinion

• Patients interested in clinical trials

• Physicians seeking specialized care or co-management for their patients

Contact Us

For appointments, referrals, or information about current clinical trials:

Email: [email protected]

Phone: (310) 794-5023