Polycystic Kidney Disease Data Repository
| Status: | Recruiting |
|---|---|
| Conditions: | Renal Impairment / Chronic Kidney Disease |
| Therapuetic Areas: | Nephrology / Urology |
| Healthy: | No |
| Age Range: | 18 - Any |
| Updated: | 10/13/2018 |
| Start Date: | November 2002 |
| End Date: | December 2026 |
| Contact: | Stephanie Donahue, NP |
| Email: | sld9001@nyp.org |
| Phone: | 212-746-1591 |
Autosomal Dominant 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.
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.
Visit #1:
- 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.
- 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.
Inclusion Criteria:
- Any person, age 18 or older, with previously diagnosed ADPKD is eligible to
participate.
Exclusion Criteria:
- Inability to provide informed consent.
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