Hepato/Renal Fibrocystic Diseases Translational Resource
The 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) (if the patient is under 12) & Assent Form (PDF) (if the patient is between 12-17)
2: Complete and sign the Release of Medical Information Authorization (PDF)
3: Tell us who your child's physician is (online form)
). She will confirm participation. If you have questions about any of the above, please reach out to Jennie by calling 202-476-2761.
Resources for physicians seeking to learn more about the study or to input patient data:
Resources and Links for Parents
PubMed links to recent key ARPKD-related reports
Autosomal Recessive Polycystic Kidney Disease (ARPKD): What Every Family Should Know (video)
Other major publicly available ARPKD resources