Clinical Care of Autosomal Polycystic Kidney Disease: Retrospective Analysis and Prospective PKD Genotyping
| Status: | Recruiting |
|---|---|
| Healthy: | No |
| Age Range: | 18 - Any |
| Updated: | 10/13/2018 |
| Start Date: | December 2013 |
| End Date: | December 2020 |
| Contact: | Ines Chicos, CCRC |
| Email: | inc9012@nyp.org |
| Phone: | 212-746-3541 |
Chart Review/PKD Genotyping
This is a retrospective analysis to include demographic, clinical, biochemical, and genetic
data that will further explore the natural history of ADPKD and assess the factors that are
likely to be associated with the progression of disease and the incidence of complications
including progressive chronic kidney disease, cardiovascular disease, and cerebrovascular
disease.
data that will further explore the natural history of ADPKD and assess the factors that are
likely to be associated with the progression of disease and the incidence of complications
including progressive chronic kidney disease, cardiovascular disease, and cerebrovascular
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.
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.
Inclusion Criteria:
- Subjects should have a confirmed ADPKD diagnosis.
Exclusion Criteria:
- Unable to provide informed consent for PKD Genotyping.
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