Redefining Kidney Diagnosis, Treatment & Management

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Polycystic Kidney Disease Data Repository


Autosomal Dominant Polycystic Kidney Disease

Protocol Title

Autosomal Dominant Polycystic Kidney Disease Data Repository

Principal Investigator

Jon D. Blumenfeld, MD
Telephone: 212-746-1495
Fax: 212-288-8370

Contact Information

Ines Chicos, CCRC
Telephone: 212-746-3541
Fax: 212-288-8370

Enrollment Status

Open to Enrollment

Brief Summary of Protocol

Autosomal dominant polycystic kidney disease (ADPKD) is the most common inherited kidney disease, affecting more than 500,000 people in the U.S. and 10 million people worldwide. ADPKD is the 4th most common cause of kidney failure requiring dialysis and/or transplantation. Over half of all ADPKD patients develop kidney failure by age 60 years, although the age of onset of kidney disease varies widely, even among members of the same family. The reason for creating this repository is to collect information about ADPKD so that we may fully understand its complications, including high blood pressure, kidney failure, stroke, and heart disease. This information may also aid in the development of improved methods for diagnosis of ADPKD and strategies for treatment. If you join the research study, you will take part for as long as you wish to continue. About 500 people will take part in the research study.


You may be eligible to enter this study if you are 18 or older and have been previously diagnosed with ADPKD.

Potential Benefits:

You and others may provide benefit by the increased understanding that this information may give us about polycystic kidney disease. However, we cannot guarantee that you will benefit from this study.

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

IRB Information

Weill Cornell Medical College IRB
Protocol # 0304006105 NCT00792155
Identifier: NCT00792155

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