New registry aims to unlock secrets of kidney disease that starts in childhood
NCT ID NCT04338048
First seen Jun 27, 2026 · Last updated Jun 27, 2026
Summary
This study creates a registry to collect health information from people with Autosomal Dominant Polycystic Kidney Disease (ADPKD), the most common genetic cause of kidney failure. While ADPKD was once thought to only affect adults, researchers now know it begins in childhood, but there are no clear guidelines for managing it early. By gathering medical data and optional blood or urine samples from 300 participants, the study hopes to fill that gap and build better online resources for patients and families.
What this could mean
Our plain-language read of the trial. This is informational only — not medical advice or a prediction.
- What this could lead to
- If successful, this registry could provide the first evidence-based guidelines for managing ADPKD in children and help families understand the disease earlier.
- What could go wrong
- This is an observational registry, not a treatment trial, so it will not directly change outcomes for participants. Results depend on how many people join and share data over time.
This is an AI summary of the original study and may miss details. Read our disclaimer.
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
Locations
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Children's Hospital of Philadelphia
RECRUITINGPhiladelphia, Pennsylvania, 19146, United States
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Children's National Hospital
RECRUITINGWashington D.C., District of Columbia, 20010, United States
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Cohen Children's Medical Center
ENROLLING_BY_INVITATIONNew Hyde Park, New York, 11042, United States
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Mayo Clinic
RECRUITINGRochester, Minnesota, 55902, United States
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