Polycystic Kidney Disease Data Repository
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.
Polycystic Kidney Disease
|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 ] [ Designated as safety issue: No ]Polycystic kidney disease data repository
Biospecimen Retention: Samples With DNA
|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)|
- 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.
Please refer to this study by its ClinicalTrials.gov identifier: NCT00792155
|Contact: Stephanie Donahue, NPfirstname.lastname@example.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 email@example.com|
|Principal Investigator:||Jon Blumenfeld, MD||The Rogosin Institute|