Polycystic Kidney Disease Data Repository

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Brief Title

Polycystic Kidney Disease Data Repository

Official Title

Autosomal Dominant Polycystic Kidney Disease Data Repository

Brief Summary

      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.
    

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:

      - Renal and hepatic magnetic resonance imaging

      Additional assessment and testing:

        -  Genetic assessment: An extensive family history of PKD will be obtained from the
           patient.

        -  Genotyping of specific PKD1 and PKD2 mutations

      Follow-up Study Visits:

      - Patients will return to the outpatient facility for detailed follow-up examinations every
      other year after Visit 1.
    


Study Type

Observational


Primary Outcome

Polycystic kidney disdease data repository


Condition

Polycystic Kidney Disease



Publications

* Includes publications given by the data provider as well as publications identified by National Clinical Trials Identifier (NCT ID) in Medline.

Recruitment Information



Estimated Enrollment

500

Start Date

November 2002

Completion Date

December 2026

Primary Completion Date

December 2026

Eligibility Criteria

        Inclusion Criteria:

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

        Exclusion Criteria:

          -  Inability to provide informed consent.
      

Gender

All

Ages

18 Years - N/A

Accepts Healthy Volunteers

No

Contacts

Jon Blumenfeld, MD, 212-746-3541, [email protected]

Location Countries

United States

Location Countries

United States

Administrative Informations


NCT ID

NCT00792155

Organization ID

0304006105


Responsible Party

Sponsor

Study Sponsor

The Rogosin Institute

Collaborators

 Weill Medical College of Cornell University

Study Sponsor

Jon Blumenfeld, MD, Principal Investigator, The Rogosin Institute


Verification Date

May 2021