We provide grants to support facilities or service sused by PKD scientists at either no cost or a greatly discounted cost. Core research grants leverage our funding of research facilities, databases and services to benefit the entire PKD research community.
Why is it important?
We are the primary funder of each of the four labs. Without the support of the our donors, this critical work would be at risk.
PKD Electron Microscopy Core for PKD Research
Director: Robert Bacallao, M.D., Indiana School of Medicine, Electron Microscopy Center
Under the direction of an experienced electron microscopist, the lab is dedicated to facilitating research on PKD and other hepatorenal fibrocystic diseases.
- Lab performs electron microscopy (EM) evaluations for researchers around the globe at a 90 percent discount.
- In 2013, the lab handled seven projects from U.S. researchers.
- Four publications referenced the EM Core in 2013.
ADPKD Mutation Database (PKDB)
Director: Peter Harris, Ph.D., Mayo Clinic
The PKDB collects mutation information from ADPKD families and clinical testing results of pharmaceutical companies, which allows the database to provide greater clarity for PKD researchers about the significance of the many variants found in ADPKD genes.
- Most comprehensive listing of all published PKD1 and PKD2 mutations. Information is available to researchers around the world at no cost.
- In 2013, the PKDB had 6,421 visits from 1,845 unique visitors representing 56 countries and 39 states.
- Version 3.0 of the database launched in March 2014.
PKD Research Biomaterials and Cellular Models Core
Director: Darren Wallace, Ph.D., University of Kansas Medical Center
This core lab assists PKD research by providing human and animal PKD tissues, as well as high-quality biological materials, to researchers to assist in the development and use of PKD cell models to test specific hypotheses and evaluate drug effects. This includes fixed and frozen tissues, cyst fluids and primary cells isolated from human PKD kidneys retrieved during surgery (some of which come through our tissue donation program).
- Biomaterials provided to requesting research labs at no cost because of the support of the PKD Foundation.
- In 2013, 16 labs worldwide received biomaterials, including the
- National Institutes of Health and three biotech companies.
Director: Steve Broadbent, Critical Path Institute
The goal of the PKDOC Database is to use standardized clinical data from PKD patients to provide support for the use of total kidney volume (TKV) as a surrogate outcome measure in clinical trials. Glomerular filtration rate (GFR) is the current outcome measure, but it remains relatively steady in PKD patients until late in the disease, making it difficult to evaluate new therapies.
- Data for the PKDOC Database was compiled from three patient registries and the CRISP observational studies.
- Analysis of the aggregate data was performed to consider the relationship between clinical factors associated with PKD (hypertension, hematuria, end stage renal disease and TKV).
- Results of the analysis were submitted to the U.S. Food and Drug Administration and the European Medicines Agency in 2014 and we are currently awaiting response.