Understanding Autosomal Dominant Polycystic Kidney Disease in Children
Autosomal Dominant Polycystic Kidney Disease (ADPKD) Study
Children's Hospital of Philadelphia · NCT04338048
This study is looking to gather medical information about how Autosomal Dominant Polycystic Kidney Disease affects children to help improve care and resources for families.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 300 (estimated) |
| Ages | N/A to 18 Years |
| Sex | All |
| Sponsor | Children's Hospital of Philadelphia (other) |
| Locations | 4 sites (Washington D.C., District of Columbia and 3 other locations) |
| Trial ID | NCT04338048 on ClinicalTrials.gov |
What this trial studies
This observational study aims to gather comprehensive medical information on Autosomal Dominant Polycystic Kidney Disease (ADPKD) and related hepato/renal fibrocystic diseases, particularly focusing on the disease's progression in children. Participants will provide consent for the study team to access their past, current, and future medical records, which will be anonymized and entered into a specialized clinical database. The study seeks to fill the gap in evidence-based guidelines for managing ADPKD in pediatric patients and expand educational resources available online. No clinic visits are required for participation, making it accessible for families.
Who should consider this trial
Good fit: Ideal candidates include individuals diagnosed with Autosomal Dominant Polycystic Kidney Disease through clinical information, imaging, or genetic testing.
Not a fit: Patients with Autosomal Recessive Polycystic Kidney Disease or significant urinary tract malformations may not benefit from this study.
Why it matters
Potential benefit: If successful, this study could lead to improved management strategies and resources for children diagnosed with ADPKD.
How similar studies have performed: While there is limited data on similar studies focusing on pediatric ADPKD, the approach of gathering comprehensive medical histories has shown promise in other chronic conditions.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Demonstration of ADPKD by clinical information, imaging studies, biopsy, autopsy, or genetic testing. Exclusion Criteria: * Patients with Autosomal Recessive Polycystic Kidney disease (ARPKD), urinary tract malformations or major congenital anomalies of other systems suggesting a diagnosis other than recessive hepato-renal fibrocystic diseases.
Where this trial is running
Washington D.C., District of Columbia and 3 other locations
- Children's National Hospital — Washington D.C., District of Columbia, United States (RECRUITING)
- Mayo Clinic — Rochester, Minnesota, United States (RECRUITING)
- Cohen Children's Medical Center — New Hyde Park, New York, United States (ENROLLING_BY_INVITATION)
- Children's Hospital of Philadelphia — Philadelphia, Pennsylvania, United States (RECRUITING)
Study contacts
- Principal investigator: Lisa Guay-Woodford, MD — Children's Hospital of Philadelphia
- Study coordinator: Jasmine Jaber, MS
- Email: jaberj2@chop.edu
- Phone: 267-425-5325
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions: ADPKD