Polycystic Kidney Disease Data Repository

The Rogosin Institute

Status: Enrolling

Conditions: Polycystic Kidney Disease

Study type: Observational

Funder types: Other

Identifiers

NCT00792155

0304006105

Details and patient eligibility

About

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.

Full description

Visit #1:

• An initial detailed history, physical examination, and laboratory evaluation
• An extensive family history of PKD will be obtained from the patient.

Follow-up Study Visits:

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

Enrollment: 1,000 estimated patients

Sex: All

Ages: 18+ years old

Volunteers: No Healthy Volunteers

Inclusion criteria

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

Exclusion criteria

• Inability to provide informed consent.