Autosomal Dominant Polycystic Kidney Disease (ADPKD) Study

Phase

N/A

Condition

N/A

Treatment

N/A

Clinical Study ID

NCT04338048

23-021496

Ages < 18
All Genders

Study 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.

Eligibility Criteria

Inclusion

Inclusion Criteria:

Demonstration of ADPKD by clinical information, imaging studies, biopsy, autopsy, orgenetic testing.

Exclusion

Exclusion Criteria:

Patients with Autosomal Recessive Polycystic Kidney disease (ARPKD), urinary tractmalformations or major congenital anomalies of other systems suggesting a diagnosisother than recessive hepato-renal fibrocystic diseases.

Study Design

October 10, 2019

October 30, 2030

Study Description

This study will ask the subject's permission to see past, current, and future medical information related to the disease. Some information that is collected, would be clinic notes, lab results, and physician consult reports. The subject will be asked to sign a release of medical information form to allow the study team access to medical information.This study does not require a clinic visit to the center.

When the research study receives the information, the research study team will be able to enter the medical data into the Hepato/Renal Fibrocystic Diseases clinical database.

There will be initial data entry in the database and follow up data entries lasting for the duration of this study or until the subject chooses to not participate in the study anymore. The study team will remove the subject's name or any other identifiable health information from the received records before entering medical data into the Hepato/Renal Fibrocystic Diseases clinical database.

Connect with a study center

Children's National Hospital
Washington, District of Columbia 20010
United States
Active - Recruiting
Mayo Clinic
Rochester, Minnesota 55902
United States
Active - Recruiting
Cohen Children's Medical Center
New Hyde Park, New York 11042
United States
Site Not Available
Children's Hospital of Philadelphia
Philadelphia, Pennsylvania 19146
United States
Active - Recruiting

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