Data collection for understanding Polycystic Kidney Disease
Official title: Autosomal Dominant Polycystic Kidney Disease Data Repository
Run by The Rogosin Institute · NCT00792155 · Data updated 2026-11-12
This study is collecting detailed health information from people with autosomal dominant polycystic kidney disease to better understand the condition and improve treatment options.
Quick facts
| Study type | Observational |
|---|---|
| Ages | 18 Years and up |
| Sex | All |
| Enrollment | 1000 (estimated) |
| Sponsor | The Rogosin Institute Academic / other |
| Locations | 1 site (New York, New York) |
| Status | Recruiting |
| Started | November 2002 |
| Main results expected | December 2030 |
| Study ends | December 2030 |
| Registry record updated | November 12, 2025 |
| Trial ID | NCT00792155 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates for this study are individuals aged 18 or older who have been previously diagnosed with autosomal dominant polycystic kidney disease.
✕Probably not a fit
Patients who are unable to provide informed consent will not benefit from this study.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This observational study aims to create a comprehensive data repository for individuals diagnosed with autosomal dominant polycystic kidney disease (ADPKD). Participants will undergo an initial detailed history, physical examination, and laboratory evaluation, followed by follow-up visits every two years to monitor their condition. The goal is to gather extensive information on the complications associated with PKD, such as high blood pressure and kidney failure, to enhance understanding and treatment strategies for this common inherited kidney disease.
Why it matters
Potential benefit: If successful, this study could lead to improved treatment strategies and better management of Polycystic Kidney Disease.
How similar studies have gone: Other studies focusing on data collection for chronic conditions have shown success in improving understanding and treatment, making this approach promising.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * Any person, age 18 or older, with previously diagnosed ADPKD is eligible to participate. Exclusion Criteria: * Inability to provide informed consent.
Where it's running
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The Rogosin Institute
New York, New York, United States Recruiting
Study contacts
- Principal investigator: Jon Blumenfeld, MD — The Rogosin Institute
- Study coordinator: Jon Blumenfeld, MD
- Email: jdblume@nyp.org
- Phone: 212-746-1553
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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Amnioinfusion to help fetuses with kidney problems
This study is testing if giving extra fluid to pregnant women with fetuses that have serious kidney problems can help improve the babies' chances of survival and healthy development.
-
Effect of a Ketogenic Diet on Polycystic Kidney Disease
This study is testing if following a ketogenic diet for a year can help people with polycystic kidney disease keep their kidneys healthier and slow down the disease.
-
Observational study on early-stage polycystic kidney disease
This study is collecting samples from people with early-stage polycystic kidney disease and their family members to find signs that show how the disease is changing, which could help create new treatments.
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Observational study on Polycystic Kidney Disease
This study is trying to learn more about autosomal dominant polycystic kidney disease by gathering information from 350 adults to improve understanding of the disease and its effects on health.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.