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Polycystic Kidney Disease Data Repository
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Purpose
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.
| Condition |
|---|
| Polycystic Kidney Disease |
| Study Type: | Observational |
| Study Design: | Observational Model: Cohort Time Perspective: Prospective |
| Official Title: | Autosomal Dominant Polycystic Kidney Disease Data Repository |
- Polycystic kidney disdease data repository [ Time Frame: 10 years ]Polycystic kidney disease data repository
Biospecimen Retention: Samples With DNA
| Estimated Enrollment: | 500 |
| Study Start Date: | November 2002 |
| Estimated Study Completion Date: | December 2026 |
| Estimated Primary Completion Date: | December 2026 (Final data collection date for primary outcome measure) |
Visit #1:
- An initial detailed history, physical examination, and laboratory evaluation
The following imaging procedures will be performed within three months of the first study visit:
- Renal and hepatic magnetic resonance imaging
Additional assessment and testing:
- Genetic assessment: An extensive family history of PKD will be obtained from the patient.
- Genotyping of specific PKD1 and PKD2 mutations
Follow-up Study Visits:
- Patients will return to the outpatient facility for detailed follow-up examinations every other year after Visit 1.
Eligibility| Ages Eligible for Study: | 18 Years and older (Adult, Senior) |
| Sexes Eligible for Study: | All |
| Accepts Healthy Volunteers: | No |
| Sampling Method: | Non-Probability Sample |
Inclusion Criteria:
- Any person, age 18 or older, with previously diagnosed ADPKD is eligible to participate.
Exclusion Criteria:
- Inability to provide informed consent.
Contacts and LocationsPlease refer to this study by its ClinicalTrials.gov identifier: NCT00792155
| Contact: Stephanie Donahue, NP | 212-746-1591 | sld9001@nyp.org | |
| Contact: Ines Chicos, CCRC | 212-746-3541 |
| United States, New York | |
| The Rogosin Institute | Recruiting |
| New York, New York, United States, 10021 | |
| Contact: Stephanie Donahue, NP 212-746-1591 sld9001@nyp.org | |
| Principal Investigator: | Jon Blumenfeld, MD | The Rogosin Institute |
More Information
| Responsible Party: | The Rogosin Institute |
| ClinicalTrials.gov Identifier: | NCT00792155 History of Changes |
| Other Study ID Numbers: |
0304006105 |
| Study First Received: | November 14, 2008 |
| Last Updated: | August 9, 2016 |
Keywords provided by The Rogosin Institute:
|
PKD |
Additional relevant MeSH terms:
|
Kidney Diseases Polycystic Kidney Diseases Polycystic Kidney, Autosomal Dominant Urologic Diseases Kidney Diseases, Cystic |
ClinicalTrials.gov processed this record on September 20, 2017