Clinical Care of Autosomal Polycystic Kidney Disease: Retrospective Analysis and Prospective PKD Genotyping (ADPKD)
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|ClinicalTrials.gov Identifier: NCT02161068|
Recruitment Status : Recruiting
First Posted : June 11, 2014
Last Update Posted : May 20, 2021
|Condition or disease|
To explore questions regarding the natural history of PKD, as well as other, unforeseen issues, a comprehensive database of demographic, clinical, biochemical, and genetic data is required. This descriptive retrospective study can serve as a source of information regarding either the entire ADPKD population, or subsets of patients with specifically targeted characteristics. This will inform future prospective studies that will be designed to address issues regarding the natural history and complications of ADPKD.
The goal of this project is to collect data from a large population of patients with PKD. Based upon the estimated prevalence of PKD (1:500 and 1:1000 live births), it is estimated that there may be 10,000 PKD patients in the New York City area. This sample size far exceeds any database established thus far. As many as 40% of affected PKD patients are reportedly unaware of a family history of this disease, in part because many patients may go undiagnosed until they present with a medical complication (e.g., hypertension, kidney failure). Furthermore, this initiative will provide an opportunity to compare data from racially diverse populations.
|Study Type :||Observational|
|Estimated Enrollment :||700 participants|
|Official Title:||Chart Review/PKD Genotyping|
|Study Start Date :||December 2013|
|Estimated Primary Completion Date :||December 2022|
|Estimated Study Completion Date :||December 2022|
- Natural history of ADPKD [ Time Frame: Up to 11 years ]Retrospective review to determine clinical, genetic, and radiographic characteristics that may influence the incidence of renal and extrarenal complications of ADPKD and prospective PKD genotyping if not previously performed.
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): NCT02161068
|Contact: Ines Chicos, CCRCemail@example.com|
|United States, New York|
|The Rogosin Institute||Recruiting|
|New York, New York, United States, 10021|
|Principal Investigator: Jon Blumenfeld, MD|
|Principal Investigator:||Jon Blumenfeld, MD||The Rogosin Institute|