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Polycystic Kidney Disease Data Repository
This study is currently recruiting participants.
Verified by Rockefeller University, November 2008
Sponsors and Collaborators: Rockefeller University
The Rogosin Institute
Memorial Sloan-Kettering Cancer Center
Information provided by: Rockefeller University
ClinicalTrials.gov Identifier: NCT00792155
  Purpose

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 the investigators 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.


Condition
Polycystic Kidney Disease

Genetics Home Reference related topics: polycystic kidney disease
U.S. FDA Resources
Study Type: Observational
Study Design: Cohort, Prospective
Official Title: Autosomal Dominant Polycystic Kidney Disease Data Repository

Further study details as provided by Rockefeller University:

Biospecimen Retention:   Samples With DNA

Biospecimen Description:

Detailed Description:

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.

  Eligibility

Ages Eligible for Study:   18 Years and older
Genders Eligible for Study:   Both
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study Population

All patients enrolled in this study will have the diagnosis of autosomal dominant kidney disease. Diagnostic criterion is the presence of a total of 5 cysts in both kidneys, or, for patients older than 65 years, more than 4 cysts in each kidney. Genotyping is not routinely performed in clinical practice; therefore, this information will not be available as a diagnostic criterion for most patients prior to enrollment.

Criteria

Inclusion Criteria:

  • Any person, age 18 or older, with previously diagnosed ADPKD is eligible to participate.

Exclusion Criteria:

  • Inability to provide informed consent.
  Contacts and Locations
Please refer to this study by its ClinicalTrials.gov identifier: NCT00792155

Contacts
Contact: Stephanie Donahue, NP 212-746-1591 donahus@rockefeller.edu
Contact: Ines Chicos, CCRC 212-746-3541

Locations
United States, New York
The Rockefeller University Hospital Recruiting
New York, New York, United States, 10065
Contact: Caryne Roey     212-327-8409     croey@rockefeller.edu    
The Rogosin Institute Recruiting
New York, New York, United States, 10021
Contact: Stephanie Donahue, NP     212-746-1591     donahus@rockefeller.edu    
Sponsors and Collaborators
Rockefeller University
The Rogosin Institute
Memorial Sloan-Kettering Cancer Center
Investigators
Principal Investigator: Jon Blumenfeld, MD The Rogosin Institute
Principal Investigator: Stephanie Donahue, NP The Rogosin Institute
  More Information

Responsible Party: The Rogosin Institute ( Jon Blumenfeld, MD )
Study ID Numbers: JBL-0496
Study First Received: November 14, 2008
Last Updated: November 14, 2008
ClinicalTrials.gov Identifier: NCT00792155  
Health Authority: United States: Institutional Review Board

Keywords provided by Rockefeller University:
PKD

Study placed in the following topic categories:
Urologic Diseases
Polycystic Kidney, Autosomal Dominant
Kidney Diseases, Cystic
Polycystic Kidney Diseases
Kidney Diseases

ClinicalTrials.gov processed this record on January 15, 2009