Actively Recruiting
Autosomal Dominant Polycystic Kidney Disease (ADPKD) Study
Led by Children's Hospital of Philadelphia · Updated on 2025-06-13
300
Participants Needed
4
Research Sites
N/A
Total Duration
On this page
Sponsors
C
Children's Hospital of Philadelphia
Lead Sponsor
N
National Institutes of Health (NIH)
Collaborating Sponsor
AI-Summary
What this Trial Is About
Autosomal Dominant Polycystic Kidney Disease (ADPKD) is the most common inherited cause of kidney failure and has long been seen as a disease that starts in adulthood. Recent understanding shows the disease begins in childhood, but there is limited data on how it progresses during these early years. This study aims to better understand ADPKD and other related liver and kidney fibrocystic diseases, while also providing accessible online resources about these conditions for everyone. Participants diagnosed with ADPKD or similar dominant hepato/renal fibrocystic diseases will allow the study team to access their medical records, including clinic notes, lab results, and physician reports. There are no required visits to a study center. Medical information will be entered into a clinical database for these diseases, with personal identifiers removed to maintain privacy. Data collection includes initial and follow-up entries over the study period. Participants will contribute medical data for up to 10 years or until they decide to leave the study. The research team will monitor the information collected in the Hepato/Renal Fibrocystic Diseases clinical database. This approach helps researchers learn more about the clinical course of ADPKD in children without requiring in-person visits, minimizing burden for participants and families.
CONDITIONS
Brief Title
Autosomal Dominant Polycystic Kidney Disease (ADPKD) Study
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Diagnosis of ADPKD confirmed by clinical information, imaging, biopsy, autopsy, or genetic testing
- Age 18 years or younger
You will not qualify if you...
- Diagnosis of Autosomal Recessive Polycystic Kidney Disease (ARPKD)
- Presence of urinary tract malformations or major congenital anomalies suggesting other recessive hepato-renal fibrocystic diseases
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
No clinic visits are required; eligibility is determined through medical records review.
Duration - Up to 10 years
Participants' past, current, and future medical information related to ADPKD is collected and entered into a clinical database.
No clinic visits are required; data collection is based on medical records and reports.
Trial Site Locations
Total: 4 locations
1
Children's National Hospital
Washington D.C., District of Columbia, United States, 20010
Actively Recruiting
2
Mayo Clinic
Rochester, Minnesota, United States, 55902
Actively Recruiting
3
Cohen Children's Medical Center
New Hyde Park, New York, United States, 11042
Enrolling by Invitation
4
Children's Hospital of Philadelphia
Philadelphia, Pennsylvania, United States, 19146
Actively Recruiting
Research Team
J
Jasmine Jaber, MS
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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