Hepato/Renal Fibrocystic Diseases Translational ResourceThe 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.
Core A Clinical Database
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) (English • Spanish • French • Portuguese) (if the patient is under 12) & Assent Form (PDF) (English • Spanish • French • Portuguese) (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 (firstname.lastname@example.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:
Core A Tissue Repository
Core A has partnered with the University of Alabama at Birmingham (UAB) Tissue Procurement Resource to develop a companion Tissue Repository for ARPKD and other hepato-renal fibrocystic diseases.
For patients/familes interested in contributing tissues to this Core A Tissue Repository, please contact Christine Tran (email@example.com • 202-476-2197). She will answer general questions; arrange to have a mailer with all the tissue sample collection materials and instructions sent to your physicians; as well as provide contact information for the UAB Tissue Procurement Resource.
Please note: this tissue collection effort is related to, but independent of, the Core A Clinical Database and participation in one does not obligate participation in the other. Core A is facilitating access to this additional resource. The consenting process will use the UAB Informed Consent/Assent forms and be handled by the UAB Tissue Procurement personnel.
Core A Genetic Resource
Resources and Links for Parents
- PKD in Children - Basics (PDF)
- Dialysis and Transplantation (PDF)
- Dialysis and Transplantation in Teens (PDF)
- ARPKD Liver Disease (PDF)
- ARPKD Liver Disease 2014 (PDF)
- ARPKD Perinatal Issues (PDF)
- Nutrition in Chronic Kidney Disease (PDF)
- Transitioning Care in Chronic Disease (PDF)