ARPKD and ARPKD-Related Diseases Database

North, Central and South America

Overview

Researchers at Children’s National would like to know more about autosomal recessive polycystic kidney disease (ARPKD) and other hepato/renal fibrocystic diseases. They also want to expand their web-based resources so anyone can learn about ARPKD or other hepato/renal fibrocystic diseases.

Participation in this study entails allowing the study researchers to see your past, current, and future medical information related to ARPKD. This study does not require a clinic visit to Children’s National. Some information that they would collect would be clinic notes, lab results, and physician consult reports. Participants will be asked to sign a release of medical information form to allow the study team access to their medical information. When they receive the information, the research study team will be able to enter the medical data into the Hepato/Renal Fibrocystic Diseases clinical database. They will remove participant names or any other identifiable health information (such as name, address) from study received records before entering your medical data into the Hepato/Renal Fibrocystic Diseases clinical database.

 

You may qualify if you:

  • Are a male or female of any age
  • Have a diagnosis of ARPKD or ARPKD-like disease
  • Demonstration of hepato/renal fibrocystic disease by clinical information, imaging studies, biopsy, autopsy, or genetic testing
  • Have a child (alive or deceased) with a relevant diagnosis

 

Contact information:

Elena Gibson, RN (GER)
202-476-2922
egibson@childrensnational.org

Lisa M Guay-Woodford, MD
202-476-6439
LGuaywoo@childrensnational.org