The Jack J. Dreyfus Outpatient Clinic at the Rogosin Institute is the primary site for new patient and follow-up patient visits. It is located at the NewYork-Presbyterian/Weill Cornell can1pus. Available services include collection of blood and urine samples and intravenous infusions of medications and fluids. Referrals are provided to consultants and services that are on-campus, including advanced kidney disease education and care, home and in-center dialysis, transplant medical and surgical specialists, and imaging facilities. The Susan R. Knafel PKD Center is a major component of our outpatient clinic. ADPKD patients have access to all of the above offerings, as well as a behavioral health program focused on the care of patients with chronic kidney disease. We also offer emotional support services and monthly patient PKD meet-ups with the local chapter of the PKD Foundation. ADPKD-specific research programs, including a large ADPKD Repository, have been ongoing for more than 20 years.
Center of Excellence
Centers of Excellence provide the broadest range of services and expertise.
About the COE ProgramCore Services
To be a PKD Foundation Center of Excellence, a care center offers diagnostic and therapeutic services with identified staff responsible for most services in each of the following disciplines:
- Nephrology
- Radiology
- Nutrition
- Hepatology
- Genetics
- Pain management
- Patient navigation services
Care Team
-
Jon Blumenfeld, MD
PKD primary focus
-
Daniil Shimonov, MD
PKD primary focus
- James Chevalier, MD, Clinic Director Familiar with PKD
- Susan Assenza, Patient Navigator Familiar with PKD
Heedeok Han, M.D.
“Our COE designation has been tremendously positive for us, as it has elevated our ability to grow and continue to provide comprehensive, patient-centered care by uniting our multidisciplinary team and implementing best practices, which has directly improved outcomes for our PKD patients.”
Other Locations Close By
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SUNY Downstate Health Sciences University
UHB Nephrology clinic offers comprehensive services to ADPKD patients referred from primary care providers in the community with suspected cystic kidney diseases detected on a routine ultrasound of the abdomen, or a CT Scan, or patients who have a family history of ADPKD, or have CKD with cysts. This clinic is open 7 days a week with Nephrology services available Mondays, Tuesdays and Fridays from 1 PM to 5 PM. Options for other days to support the needs of our patients on other days is also available as either in person or tele-health services. All other services relevant to ADPKD patients such the availability of a Hepatologist, GI services, Urology, General surgery, Cardiology, primary care services, Neurology services, Neuroradiology services and radiology services, are all available in the same clinic on some specific days 6 days a week. We offer genetic testing for CKD and for all cystic kidney diseases. In complicated genetic test results requiring further interpretation, and guidance from genetic counsellers or if it involves assessment of families across generations, or when it involves whole genome testing we partcipate collaboratively with Columbia University in such special circumstances. Our Neprhologits have had a long term relationship with Nephrologists from Columbia University in such instances. All Nephrologists are also medical directors at several affiliated dialysis clinics which offer in-center hemodialysis, home hemodialysis and Peritoneal Dialysis for such patients should the need arise. UHB Downstate Hospital is also home to the only Kidney Transplant services in Brooklyn and currently performing over 140 transplants per year. Our transplant center is the only transplant center in Brooklyn, Queens and Staten Island. The transplant clinic is fully staffed with many transplant surgeons, NP’s, PA’s and seasoned nursing staff. Our team of Nephrologists offer diagnostic and therapeutic services for the management of ADPKD and are all REMS certified to prescribe medications approved for ADPKD to slow the growth of renal cysts. This clinic is home to several Nephrology clinical trials and is actively following several patients with ADPKD that would be willing to participate in new trials, when available. We have a full time dedicated clinical coordinator to actively enroll and help follow such patients longitudinally. We have a an entire Department dedicated to offering all services for NIH sponsored basic and clinical sciences trials as well as pharmaceutical sponsored clinical trials from the College of Medicine. We have post graduate scientists who can create and maintain registries. Our group is enthusiastic to participate in further clinical trials to understand the reasons for progression of CKD in some patients and those who do not respond to AVP antagonists, so as to help prevent these patients going onto dialysis, thus offering hope to our patients who are living with the fear of this disease and its burden day in and day out. SUNY Downstate Health Sciences University is home to SUNY Downstate Medical School, School of Public Health, Nursing school, and several other allied health care professional schools. These schools offer graduate, post graduate and technical training in several categories of sciences beneficial to patients with ADPKD.
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Montefiore Medical Center
The ADPKD program at Montefiore is a patient and physician support program that supports patients with ADPKD who are taking Jynarque as well as assisting nephrologists in managing ADPKD. We help nephrologists identify patients who are appropriate candidates for Jynarque, provide extensive patient education on ADPKD and Jynarque, enroll patients in the Jynarque REMS, oversee prescription of this medication and monitor patients on therapy. We work closely with other specialties to manage conditions associated with ADPKD as well as provide ongoing Chronic Kidney Disease (CKD) care up through and including CKD education, pre-ESRD education, kidney transplant referral and referral to dialysis care of all home and incenter modalities.
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Mount Sinai Hospital
The Mount Sinai Hospital is ranked 12th for Nephrology by U.S. News & World Report. The Mount Sinai Hospital provides expert diagnosis and treatment of all forms of kidney disease. We coordinate your care with other doctors and design a personalized plan to treat your kidney problems.
Along with our excellent hospitals and convenient medical practices throughout New York City, Mount Sinai Health System includes the Icahn School of Medicine at Mount Sinai. At the School, our doctors research the causes of and new ways to prevent and treat kidney disease. We offer you direct access to our clinical trials so you can be treated with promising new medications early. Our generous National Institutes of Health research budget supports our nephrology studies for your benefit. In addition, we educate doctors and staff through our nephrology training program—one of the largest in the United States.
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