ADPKD

Autosomal Dominant Polycystic Kidney Disease Database

Study Information for Patients and Clinicians

Children’s Hospital of Philadelphia 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 267-425-5325 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)

  • 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 267-425-5325.


    • Resources and Links for Parents

  • PKD in Children - Basics (PPT)
  • 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 Program Manager
    Children’s Hospital of Philadelphia
    2716 South Street
    Philadelphia, PA 19146
    Tel: 267-425-5325
    Email: [email protected]
    Lisa M. Guay-Woodford, MD
    Children’s Hospital of Philadelphia
    2716 South Street
    Philadelphia, PA 19146
    Tel: 267-425-0315 Fax: 215-590-3705
    Email: [email protected]