ARPKDB

Autosomal Recessive Polycystic Kidney Disease dataBase

Please cite grant number P30 DK074038 for services or resources provided by the UAB Hepatorenal Fibrocystic Disease Core Center.

Study Information for Patients and Clinicians

Children’s National Medical Center 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 Ms. 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)

  • Please provide us with the contact information for both you and your child's/your physician here (online form)

  • Submit the first two forms via email to Ms. Jasmine Jaber ([email protected]). She will confirm participation. If you have questions about any of the above, please reach out to Ms. Jaber 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 partnered with the University of Alabama at Birmingham (UAB) Tissue Procurement Resource to develop a companion Tissue Repository 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 UAB 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. The consenting process will use the UAB Informed Consent/Assent forms and be handled by the UAB Tissue Procurement personnel.


    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)
  • Please provide us with the contact information for the patient, the parents, and the physician who you want to collect the blood samples (online form)
  • Get in touch

    Jasmine Jaber
    Clinical Research Coordinator
    Children’s National Health System
    111 Michigan Avenue, NW M3245
    Washington, DC 20010
    Tel: 202-476-2838 Fax: 202-476-6636
    Email: [email protected]
    Elena Gibson
    Children’s National Health System
    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 Health System
    111 Michigan Ave NW
    Washington, DC 20010
    Tel: 202-476-6439 Fax: 202-476-4610
    Email: [email protected]