Polycystic Kidney Disease Center Named PKD Center of Excellence

By Brenda Lange

The PKD Foundation recently recognized Columbia’s Polycystic Kidney Disease Center as one of the foundation’s 43 Centers of Excellence in the United States. PKD Foundation Centers of Excellence offer patient-focused, comprehensive care delivered by a team of kidney disease experts, clinical trials, and new therapies.

Columbia has, for years, provided the highest standard of care for patients with PKD, a common genetic disorder that causes fluid-filled cysts to grow in the kidneys. The disorder affects about 500,000 people in the United States and often leads to kidney failure.

Nearly two years ago, a concerted effort was made to streamline treatment and formalize resources for Columbia’s PKD patients.

“We had all the resources and nephrologists, but this dedicated effort to put all the pieces together has made the center much more efficient,” says Heedeok Han, MD, assistant professor of medicine and clinical director of the center.

With a dedicated clinic, new patients are seen much faster. They are generally contacted within 48 hours of their initial outreach and are scheduled for an appointment within two to four weeks. The PKD Foundation also funds the center’s dedicated patient navigator who coordinates each patient’s care and acts as an information resource. The patient navigator is proficient in Spanish to ensure all patients in the community have the same access to care.

Although all patients are born with PKD, the disorder may go undiagnosed until adulthood when cysts enlarge and interrupt normal kidney function. Initial symptoms in these adults may be nonspecific, including high blood pressure, kidney pain, blood in the urine, kidney stones, and urinary tract infections, which often delays diagnosis.

Because PKD is a genetic condition that frequently goes unrecognized for years, all PKD patients at Columbia are offered genetic testing and counseling to give the team the opportunity to diagnose other members in the same family who need care.

With the advent in 2018 of tolvaptan, the first drug approved in the United States for the treatment of PKD, identifying patients early has more impact. When taken for several years, the drug slows the growth of kidney cysts in adults with a high risk of rapidly progressing PKD and may delay the need for a kidney transplant or dialysis.

For other patients, “lifestyle modifications including a low-salt diet and drinking a lot of water are the primary treatments at this time,” Dr. Han says.

Most patients with PKD will eventually require a kidney transplant, partly to prevent kidney damage impacting other organs such as the liver, pancreas, spleen, and heart.

“Patients with autosomal dominant PKD tend to get preemptive kidney transplants at a higher rate than the rest of the population with comparable or better outcomes,” Dr. Han says.

“When the time comes for transplantation, the members of our center are here to facilitate the process with the Columbia transplant program, one of the largest, leading programs in the country.”

The Polycystic Kidney Disease Center at Columbia (https://columbianephrology.org/pkd/) has clinics in Upper Manhattan, Westchester, and northern New Jersey. Contact nephrologyappts@cumc.columbia.edu or 212-305-3273.