Polycystic Kidney Disease Data Repository
|The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details.|
|ClinicalTrials.gov Identifier: NCT00792155|
Recruitment Status : Recruiting
First Posted : November 17, 2008
Last Update Posted : September 6, 2019
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 or disease|
|Polycystic Kidney Disease|
- 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.
|Study Type :||Observational|
|Estimated Enrollment :||500 participants|
|Official Title:||Autosomal Dominant Polycystic Kidney Disease Data Repository|
|Study Start Date :||November 2002|
|Estimated Primary Completion Date :||December 2026|
|Estimated Study Completion Date :||December 2026|
- Polycystic kidney disdease data repository [ Time Frame: 10 years ]Polycystic kidney disease data repository
Biospecimen Retention: Samples With DNA
To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT00792155
|Contact: Ines Chicos, MS, CCRCfirstname.lastname@example.org|
|United States, New York|
|The Rogosin Institute||Recruiting|
|New York, New York, United States, 10021|
|Contact: Ines Chicos, MS, CCRC 212-746-3541 email@example.com|
|Principal Investigator:||Jon Blumenfeld, MD||The Rogosin Institute|