On an earlier post, Bree asked why were we able to donate Gage’s old kidney…

Here’s some information from the nurse that helped us facilitate getting Gage’s kidney in the hands of researchers* and how doing so is helpful. Teresa sent me pictures of Gage’s kidney cut up in many pieces…fascinating.

Teresa Chacana, RN, BSN, CPN
Research Nurse Coordinator
University of Alabama at Birmingham
Division of Genetic and Translational Medicine
E-mail: tchacana@uab.edu

From Teresa Chacana on donation:
“Thank you for your interest in our research. We have three open protocols relating to ARPKD (listed below) that may be of interest for you. Upon request, we can provide instructions for blood/tissue preparation, urine collection and shipment of sample.

The goal of the research conducted by Dr. Guay-Woodford is to investigate and identify the genetic basis of ARPKD, defective genetic mechanisms, genetic modifiers and mutations that affect ARPKD. UAB is the site of the ARPKD Database, which accumulates clinical information on ARPKD, affected individuals.

The protocols relating to ARPKD are as follows:

1 “Molecular Genetics of Human ARPKD.”
This is a study involving abnormalities of kidney development and function. The goal of this study is to identify the genetic basis of ARPKD. It requires a blood or DNA sample from the affected child.

2 “Analysis of Molecular Determinants in the Development of Polycystic Kidney Disease”.
In order to accomplish this goal, we need to study the function of certain genes in the kidneys of children with ARPKD. This study accepts tissue (kidney, liver, placenta, pancreas, lung, brain, and heart) and urine.

3 “P30 Core A: ARPKD Clinical and Genetic Resource (UAB Recessive PKD Research and Translational Core Center)”: This study offers clinical testing to participants through the UAB Medical Genomics Laboratory. The goals of this study are to establish a clinical database of patients with ARPKD and to collect DNA (isolated from blood or tissues samples) from as many of the clinical database participants as possible to compare DNA information with medical information. This is an internet-based data collection. Our web site is http://www.arpkdstudies.uab.edu
In this study, the participant/representative may choose to give us only medical information (not DNA) and/or medical information and a DNA sample. This study accepts recently or previously collected DNA, blood, placental blood and/or tissue sample for DNA isolation and analysis.”

*University of Kansas Medical Center takes them too…I think UAB sent some to Kansas (but don’t quote me).