Repository Study of Autosomal Dominant Polycystic Kidney Disease
| Status: | Recruiting |
|---|---|
| Conditions: | Renal Impairment / Chronic Kidney Disease |
| Therapuetic Areas: | Nephrology / Urology |
| Healthy: | No |
| Age Range: | 18 - Any |
| Updated: | 4/21/2016 |
| Start Date: | November 2013 |
| End Date: | November 2053 |
| Contact: | Ines Chicos, BS |
| Email: | inc9012@nyp.org |
| Phone: | 212-746-3541 |
The design and establishment of the Polycystic Kidney Disease (PKD) Data Repository does not
require, and may be constrained by, a narrowly conceived hypothesis. However, the PKD
Repository has been designed to include demographic, clinical, biochemical, and genetic data
that will further explore the natural history of the disorder and assess the factors that
are likely to be associated with the progression of disease and the incidence of
complications including renal failure, cardiovascular disease, and stroke.
require, and may be constrained by, a narrowly conceived hypothesis. However, the PKD
Repository has been designed to include demographic, clinical, biochemical, and genetic data
that will further explore the natural history of the disorder and assess the factors that
are likely to be associated with the progression of disease and the incidence of
complications including renal failure, cardiovascular disease, and stroke.
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.
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:
- Males and females
- Age 18 years and older
- Previously diagnosed with ADPKD
Exclusion Criteria:
- Inability to provide informed consent
We found this trial at
1
site
Click here to add this to my saved trials
