ADPKD

Autosomal Dominant Polycystic Kidney Disease Database

Study Information for Patients and Clinicians

Children’s National Hospital has established a core resource designed to develop a unique set of clinical, genetic, and educational resources for autosomal dominant polycystic kidney disease (ADPKD and other dominant forms of renal cystic disease).


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

Clinical Database


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

  • Complete and sign the Consent Form (PDF) English (if the patient is under 12) & Assent Form (PDF) English (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.


    • Resources and Links for Parents

  • PKD in Children - Basics 2016(PDF)
  • PKD - CKD Children 2016 (PDF)
  • Dialysis and Transplantation (PDF)
  • Nutrition in Chronic Kidney Disease (PDF)
  • Transitioning Care in Chronic Disease (PDF)
  • Clinical Trials Participation



    • Other Major Publicly Available ADPKD Resources

  • ADPedKD- A Global Online Platform on the Management of Children With ADPKD
  • International consensus statement on the diagnosis and management of ADPKD in children and young people
  • The Polycystic Kidney Disease Foundation

    • 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]