Data collection for understanding Polycystic Kidney Disease
Autosomal Dominant Polycystic Kidney Disease Data Repository
The Rogosin Institute · NCT00792155
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 |
|---|---|
| Enrollment | 1000 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | The Rogosin Institute (other) |
| Locations | 1 site (New York, New York) |
| Trial ID | NCT00792155 on ClinicalTrials.gov |
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.
Who should consider this trial
Good fit: Ideal candidates for this study are individuals aged 18 or older who have been previously diagnosed with autosomal dominant polycystic kidney disease.
Not a fit: Patients who are unable to provide informed consent will not benefit from this study.
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 performed: Other studies focusing on data collection for chronic conditions have shown success in improving understanding and treatment, making this approach promising.
Eligibility criteria
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 this trial is running
New York, New York
- 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
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions: Polycystic Kidney Disease, PKD