ARPKDB

Autosomal Recessive Polycystic Kidney Disease dataBase

Please cite grant number P30 DK074038

Study Information for Patients and Clinicians

Children’s National Hospital has established a NIDDK-funded interdisciplinary center of excellence in PKD-related research, with specific emphasis on ARPKD. Core A: Hepato/Renal Fibrocystic Disease Translational Resource, is a Core resource designed to develop a unique set of clinical, genetic, and educational resources for autosomal recessive polycystic kidney disease (ARPKD and other recessive forms of renal cystic disease).

Summary of the Core A Translational Resource (PDF)


IMPORTANT: If PDF forms download doesn't work, please call Jasmine Jaber at 202-476-2838 or Email at [email protected]

Core A Clinical Database

Frequently Asked Questions ( EnglishSpanishFrenchPortuguese• )


If you are the parent of a child with ARPKD and you would like to enroll your child in the study, please take the following steps:

  • Complete and sign the Consent Form (PDF) ( EnglishSpanishFrenchPortuguese)  (if the patient is under 12) & Assent Form (PDF) ( EnglishSpanishFrenchPortuguese)  (if the patient is between 12-17)

  • Complete and sign the Release of Medical Information Authorization (PDF)

  • Submit the first two forms via email to Jasmine Jaber ([email protected]). She will confirm participation. If you have questions about any of the above, please reach out to Jasmine by calling 202-476-2838.

  • Resource for physicians seeking to learn more about the study:

  • Study Information/Frequently Asked Questions (PDF) ( EnglishSpanishFrenchPortuguese
  • Core A Tissue Resource

    Core A has a Tissue Repository at Children's National Hospital for ARPKD and other hepato-renal fibrocystic diseases.


    For patients/families interested in contributing tissues to this Core A Tissue Resource, please contact Jasmine Jaber ([email protected]) 202-476-2838. She will answer general questions; arrange to have a mailer with all the tissue sample collection materials and instructions sent to your physicians; as well as provide contact information for the Tissue Procurement Resource.


    Please note: this tissue collection effort is related to, but independent of, the Core A Clinical Database and participation in one does not obligate participation in the other. Core A is facilitating access to this additional resource.


    Complete and sign the Consent Form (PDF) (if the patient is under 12) and Assent Form (PDF) (if the patient is between 12-17)

  • INSTRUCTIONS: Human Tissue Sample Collection
  • Please provide us with information about the patient and the site that is shipping tissue samples (online form)
  • Core A Genetic Resource

    Core A will perform genetic studies to identify disease-causing mutations in patients with ARPKD and other hepato-renal fibrocystic diseases. These studies require DNA samples from patients and their parents.


    For patients/families interested in participating in these genetic studies, please contact Jasmine Jaber ([email protected]) 202-476-2838. She will discuss with you the consent process for collecting blood samples to obtain DNA. We will send a mailer with a blood collection kit to your physician. In addition, we will collect your contact information using the online survey.


    Please note: these genetic studies are related to, but independent of, the Core A Clinical Database and participation in one does not obligate participation in the other.


  • Complete and sign the Consent Form (PDF) (if the patient is under 12) and Assent Form (PDF) (if the patient is between 12-17)
  • Blood Sample Collection (PDF)
  • Get in touch

    Jasmine Jaber
    Clinical Research Coordinator
    Children’s National Hospital
    111 Michigan Avenue, NW M3245
    Washington, DC 20010
    Tel: 202-476-2838 Fax: 202-476-6636
    Email: [email protected]
    Elena Gibson
    Children’s National Hospital
    111 Michigan Avenue, NW 3rd Floor Main, Suite 3250
    Washington, DC 20010
    Tel: 202-476-6877
    Email: [email protected]
    Lisa M. Guay-Woodford, MD
    Children’s National Hospital
    111 Michigan Ave NW
    Washington, DC 20010
    Tel: 202-476-6439 Fax: 202-476-4610
    Email: [email protected]