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ARPKD Database Study

Launched by CHILDREN'S HOSPITAL OF PHILADELPHIA · Jul 22, 2011

Trial Information

Current as of July 01, 2025

Recruiting

Keywords

Cystic Kidney Disease Polycystic Kidney Disease Congenital Hepatic Fibrosis Genetic Disease

ClinConnect Summary

The UAB HRFD Core Center study is focused on understanding various diseases that affect the liver and kidneys, particularly conditions like Autosomal Recessive Polycystic Kidney Disease (ARPKD) and others that involve cysts in these organs. The research aims to collect and analyze clinical information and genetic data from patients with these conditions. By building a detailed database, the study hopes to learn more about how these diseases develop and their genetic causes. This can help in finding better treatments and improving care for patients.

To participate in this study, individuals must have a diagnosed hepato/renal fibrocystic disease, which can be confirmed through medical records, imaging tests, or genetic testing. The study welcomes participants of all ages and genders. Those who join can expect to contribute to important research, have their genetic information analyzed, and potentially benefit from a growing resource of information that can help families and healthcare providers better understand these diseases. Overall, the study aims to provide valuable insights that could lead to improved care for patients with these complex conditions.

Gender

ALL

Eligibility criteria

  • Inclusion Criteria:
  • Demonstration of hepato/renal fibrocystic disease by clinical information, imaging studies, biopsy, autopsy, or genetic testing.
  • Exclusion Criteria:
  • ADPKD Urinary tract malformations Major congenital anomalies of other systems

About Children's Hospital Of Philadelphia

The Children's Hospital of Philadelphia (CHOP) is a leading pediatric healthcare institution renowned for its commitment to advancing child health through innovative research and clinical care. As a prominent clinical trial sponsor, CHOP emphasizes a multidisciplinary approach to pediatric research, fostering collaborations across various specialties to develop and evaluate groundbreaking therapies and interventions. With a focus on improving patient outcomes and enhancing the quality of life for children, CHOP is dedicated to conducting rigorous clinical trials that adhere to the highest ethical standards and scientific integrity, ultimately contributing to the global knowledge base in pediatric medicine.

Locations

Philadelphia, Pennsylvania, United States

Salt Lake City, Utah, United States

Cincinnati, Ohio, United States

Washington, District Of Columbia, United States

Philadelphia, Pennsylvania, United States

Atlanta, Georgia, United States

Washington, District Of Columbia, United States

Boston, Massachusetts, United States

Patients applied

0 patients applied

Trial Officials

Lisa Guay-Woodford, MD

Principal Investigator

Children's Hospital of Philadelphia

Timeline

First submit

Trial launched

Trial updated

Estimated completion

Not reported

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