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Autosomal Dominant Polycystic Kidney Disease (ADPKD) Study
Sponsor: Children's Hospital of Philadelphia
Summary
Autosomal Dominant Polycystic Kidney Disease (ADPKD) is the most common genetic cause of renal failure. For several decades, ADPKD was regarded as an adult-onset disease. In the last decade, it has become more widely appreciated that the disease course begins in childhood. However, evidence-based guidelines on how to manage and approach children diagnosed with or at-risk for of ADPKD are lacking. Overall, there is insufficient data on the clinical course during childhood. The study intends to get more information on Autosomal Dominant Polycystic Kidney Disease (ADPKD) and other hepato/renal fibrocystic diseases. Additionally, the study intends to expand web-based resources so anyone can learn about ADPKD or other hepato/renal fibrocystic diseases. Individuals diagnosed with the dominant form of a hepato/renal fibrocystic condition are invited to be in the study.
Key Details
Gender
All
Age Range
Any - 18 Years
Study Type
OBSERVATIONAL
Enrollment
300
Start Date
2019-10-10
Completion Date
2030-10-30
Last Updated
2025-06-13
Healthy Volunteers
No
Conditions
Locations (4)
Children's National Hospital
Washington D.C., District of Columbia, United States
Mayo Clinic
Rochester, Minnesota, United States
Cohen Children's Medical Center
New Hyde Park, New York, United States
Children's Hospital of Philadelphia
Philadelphia, Pennsylvania, United States