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(JBL-0496) Polycystic Kidney Disease Data Repository

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Polycystic Kidney Disease Data Repository (JBL-0496)

Principal Investigator:
Jon D. Blumenfeld M.D.


Contact Information:
Jon D. Blumenfeld, MD
Rockefeller University
1230 York Avenue
New York, NY 10021
Telephone: 212-746-1495
FAX: 212-288-8370
Enrollment Status:
Open to Enrollment

Brief Summary of Protocol:
Autosomal dominant polycystic kidney disease (PKD) is the most common inherited kidney disease, affecting more than 400,000 people in the U.S. and 5 million people worldwide. PKD is the 4th most common cause of kidney failure requiring dialysis and/or transplantation. Over half of all PKD patients develop kidney failure by age 60 years, although age of onset of kidney disease varies widely, even among members of the same family.

Despite the fact this is a relatively common problem, relatively few patients have been studied for a sufficient period of time to fully understand how patients are affected over the course of their lifetime. The reason for creating this repository is to collect information about PKD so that we may fully understand its complications, including high blood pressure, heart attack, and stroke. This information may also aid in the development of improved treatment strategies.

Detailed Description of Protocol:
Visit #1

- An initial detailed history, physical examination, and laboratory evaluation

The following imaging procedures will be performed within three months of the first study visit.

- Echocardiogram - Renal and hepatic magnetic resonance imaging

Follow-up Study Visits

- Patients will return to the outpatient facility for detailed follow-up examinations every other year after Visit 1. Profile:
If you join the research study, you will take part for as long as you wish to continue. The research study as a whole, including follow-up evaluations will continue yearly until you wish to conclude your participation.

About 300 people will take part in the research study

What specifically makes a person eligible for the study?
You may be eligible to enter this study:

- 18 and older

- Previously diagnosed ADPKD


18 and older

Children permitted to participate:

Potential Benefits.....
You and others may one day benefit by the increased understanding that this information may give us about polycystic kidney disease.

However, we cannot guarantee that you will benefit personally from this study.

There is no cost to you for being in this research study.

If research using your samples helps develop a drug or another product that is sold to the public, the drug company, the University and the researcher may share in some of the profits. For example, a cell line from your samples could be used to make a product for sale. There are no plans to pay you any money resulting from such discoveries. However, by participating in this study, you do not give up any rights you may have.