NCT00792155Recruiting
Polycystic Kidney Disease Data Repository
Autosomal Dominant Polycystic Kidney Disease Data Repository
Source: ClinicalTrials.gov · Last updated 12 Nov 2025
Brief summary (registry, in English)
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.
- Status (registry)
- Recruiting
- Study type
- Observational
- Enrollment
- 1000 (estimated)
- First submitted
- 14 Nov 2008
- Start date
- Nov 2002
- Primary completion date
- Dec 2030
- Lead sponsor
- The Rogosin Institute
- Diseases
- Polycystic kidney disease
- NCT number
- NCT00792155
What you commit to
- Study type: Observational
- Planned participants: 1000
- From Nov 2002 to the primary completion date, Dec 2030
- 1 site in 1 country
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Other
- Inability to provide informed consent.
Who the study is looking for
- Any person, age 18 or older, with previously diagnosed ADPKD is eligible to participate.
Age in the registry: 18 years to - · Sex: All · Does not accept healthy volunteers
Sites (1)
Sites in registry order. Pick your city on the disease page to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| The Rogosin Institute Coordinator of this site? Confirm its status | New York | United States | Recruiting |
This page is information, not medical advice. Discuss any trial with your doctor.