Hepato/Renal Fibrocystic Diseases Translational Resource

hrf-logo-400wThe University of Alabama at Birmingham Hepato/Renal Fibrocystic Disease Core Center (UAB HRFDCC) has established a NIDDK-funded interdisciplinary center of excellence in PKD-related research, with specific emphasis on ARPKD. Among the four cores, the UAB HRFDCC includes the Core A: Hepato/Renal Fibrocystic Disease Translational Resource, 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.

About the Study

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:

1: 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)
2: Complete and sign the Release of Medical Information Authorization (PDF)

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

4: Submit the first two forms via email to Mrs. Christine Tran (chtran@childrensnational.org). She will confirm participation. If you have questions about any of the above, please reach out to Christine by calling 202-476-2197.

Resource for physicians seeking to learn more about the study:

Resources and Links for Parents

Autosomal Recessive Polycystic Kidney Disease (ARPKD): What Every Family Should Know (video)

ARPKD Consensus Report

Consensus Expert Recommendations for the Diagnosis and Management of Autosomal Recessive Polycystic Kidney Disease: Report of an International Conference. Journal of Pediatrics, July 2014 (pdf)

Other Major Publicly Available ARPKD Resources