The Rogosin Institute Susan R. Knafel Polycystic Kidney Disease Center is one of the few programs in the country with a broad array of resources dedicated to the diagnosis and management of autosomal dominant polycystic kidney disease and its complications.
Rogosin’s Polycystic Kidney Disease Center was designated as a Center of Excellence by the PKD Foundation so that patients can more easily locate a patient-focused, comprehensive care team dedicated to help them live their best lives.
What is Autosomal Dominant Polycystic Kidney Disease (ADPKD)?
Autosomal dominant polycystic kidney disease (ADPKD) is the most common inherited kidney disorder and the fourth most common cause of kidney failure that requires dialysis or kidney transplantation.
ADPKD accounts for approximately 5% of all end-stage renal disease cases in the US, affecting approximately one in every 1,000 people, with more than 600,000 afflicted patients in the United States and 12 million worldwide. There is a 50% chance that each child of a parent with ADPKD will inherit ADPKD.
This disease is characterized by enlarged kidneys with many cysts, or fluid-filled sacs, within the kidneys. The number and size of these cysts increase over the years, leading to kidney failure in about half of ADPKD patients by age 60 years. Other kidney-related complications include blood in the urine, kidney stones, and urinary tract infections.
It is also a multi-organ disease, with manifestations that include cysts in the liver and pancreas, aneurysms (blood vessel dilatations), heart valve abnormalities and other cardiac involvement, and hernia.
Polycystic Kidney Disease Symptoms
Signs and symptoms of ADPKD usually first appear by age 30 years, although the diagnosis is often not identified until later in life. However, some symptoms of PKD, such as awakening from sleep to urinate, could occur during childhood.
What Happens if ADPKD is Left Untreated?
When left untreated, ADPKD can lead to serious complications. The most common complications include the following:
- Progressive loss of kidney function
- High blood pressure (hypertension)
- Liver cysts
- Blood in the urine
- Kidney stones
- Cardiovascular disease
- Urinary tract infections
- Chronic pain
How Is ADPKD Diagnosed?
At the Susan R. Knafel PKD Center, our highly experienced staff cares for more than 500 patients with ADPKD. Research at the Center aims to improve understanding of the genetic basis and clinical manifestations of ADPKD, optimizing treatment with Jynarque (tolvaptan), and evaluating potentially effective treatments in clinical trials. This has resulted in improvements in polycystic kidney disease genetic testing. Some other methods that are used to diagnose ADPKD include:
- Abdominal ultrasound
- Abdominal MRI scan
- Abdominal CT scan
Treatment For Polycystic Kidney Disease
Current ADPKD treatment aims to slow progression or prevent end stage renal disease (ESRD), which is kidney failure requiring treatment with dialysis and kidney transplantation. This is accomplished by specifically targeted medication for ADPKD (i.e. Jynarque [tolvaptan]), controlling blood pressure, preventing and treating infections, monitoring for other systemic manifestations, and optimizing general medical health. Clinical trials of new specific treatments for ADPKD are ongoing at The Rogosin Institute PKD Center.
We specialize in the medical treatment of ADPKD. Our focus is comprehensive medical care of chronic problems related to ADPKD, such as hypertension, anemia, bone health, cardiovascular health. Our kidney disease specialists work hand in hand with our Weill Cornell Medicine Transplant Program to guide kidney failure patients to transplant. We have ready access to other specialists familiar with ADPKD for interdisciplinary care of the ADPKD patient that include cardiologists, urologists, neurologists and neuroradiologists for aneurysm treatment, liver specialists, hernia surgeons, fertility/family planning. We provide access to important clinical trials. We work closely with the PKD Foundation New York Chapter and host a monthly educations/support PKD Meet Up Group, Educational seminars and participate in the TriState PKD Walk.
Schedule A Consultation
If you are experiencing symptoms of ADPKD, have family members with ADPKD or would like to learn more about ADPKD, then visit The Rogosin Institute, recognized as one of the country’s premier centers for the diagnosis and management of all forms of kidney disease. Our doctors lead the way in ADPKD care for patients in the New York Metropolitan Area and beyond. Call our office at 888-ROGOSIN or schedule an appointment with us any time.