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.

 

 

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) (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:


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 (chtran@childrensnational.org • 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

Under Construction

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