RECRUITING

Polycystic Kidney Disease Data Repository

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

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.

Official Title

Autosomal Dominant Polycystic Kidney Disease Data Repository

Quick Facts

Study Start:2002-11
Study Completion:2030-12
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT00792155

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:18 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * Any person, age 18 or older, with previously diagnosed ADPKD is eligible to participate.
  1. * Inability to provide informed consent.

Contacts and Locations

Study Contact

Jon Blumenfeld, MD
CONTACT
212-746-1553
jdblume@nyp.org

Principal Investigator

Jon Blumenfeld, MD
PRINCIPAL_INVESTIGATOR
The Rogosin Institute

Study Locations (Sites)

The Rogosin Institute
New York, New York, 10021
United States

Collaborators and Investigators

Sponsor: The Rogosin Institute

  • Jon Blumenfeld, MD, PRINCIPAL_INVESTIGATOR, The Rogosin Institute

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2002-11
Study Completion Date2030-12

Study Record Updates

Study Start Date2002-11
Study Completion Date2030-12

Terms related to this study

Keywords Provided by Researchers

  • PKD

Additional Relevant MeSH Terms

  • Polycystic Kidney Disease