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ARPKD Database Study

Study on ARPKD to understand the condition better.

Recruiting
18 years and younger
All
Phase N/A
  • Simplified description (AI rewritten)
  • Technical description (Original)

ARPKD Database Study is for understanding rare liver and kidney diseases, like Autosomal Recessive Polycystic Kidney Disease (ARPKD). These diseases can cause cysts in the liver and kidneys. This study will collect and share medical information, genetic data, and tissue samples to help doctors and researchers learn more and find better treatments. Patients can be part of different parts of the study: database (medical records), genetic testing (DNA from blood or saliva), and tissue samples (from surgeries or autopsies). No clinic visits are needed; information will be collected from past and future medical records. If you join the genetic part, a small blood or saliva sample will be needed. All samples and information will be kept safe and private.

  • Participation is optional, with no clinic visits required.
  • Blood or saliva samples may be needed for genetic testing.
  • Study information is kept confidential and lasts as long as you choose.
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Study details
    Hepato/Renal Fibrocystic Disease
    Autosomal Recessive Polycystic Kidney Disease
    Joubert Syndrome
    Bardet Biedl Syndrome
    Meckel-Gruber Syndrome
    Congenital Hepatic Fibrosis
    Caroli Syndrome
    Oro-Facial-Digital Syndrome Type I
    Nephronophthisis
    Glomerulocystic Kidney Disease

NCT01401998

Children's Hospital of Philadelphia

7 March 2026

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