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http://www.baltimorepkdcenter.org/

Center for research in polycystic kidney disease (PKD) with collaboration by international investigators. The center has several cores, including biomedical cores for antibody validation and cell cultures, educationa programs, and pilot programs for new projects.

Proper citation: Baltimore Polycystic Kidney Disease (PKD) Research and Clinical Core Center (RRID:SCR_015315) Copy   

•   Source: SciCrunch Registry

http://www.mayo.edu/research/centers-programs/human-imaging-core/overview

Core provides semiautomated MRI and computed tomography (CT) image and volumetric analyses of polycystic kidneys and liver as well as functional assessment of the kidney and heart, including measurements of renal blood flow. It also facilitates the transmission, collection and storage of anonymized imaging data used in translational PKD research and provides a system that enables PKD researchers to exchange images.

Proper citation: Translational Polycystic Kidney Disease (PKD) Center at Mayo Clinic Rochester Human Imaging Core (RRID:SCR_015304) Copy   

•   Source: SciCrunch Registry

https://www.niddk.nih.gov/research-funding/research-programs/kidney-disease-centers

A portal with detailed information about various research centers that focus on kidney disease and translational research funded by NIDDK.

Proper citation: Polycystic Kidney Disease Research and Translation Centers (RRID:SCR_015305) Copy   

•   Source: SciCrunch Registry

http://www.mayo.edu/research/centers-programs/translational-polycystic-kidney-disease-pkd-center/overview

Center that concentrates on the common, adult form of the disease, autosomal dominant PKD (ADPKD). The services provided focus on understanding the genetic basis of disease, more accurately monitoring disease progression and improving prognostics, and employing model systems to explore pathogenesis and conduct preclinical testing.

Proper citation: Translational Polycystic Kidney Disease (PKD) Center at Mayo Clinic Rochester (RRID:SCR_015313) Copy   

•   Source: SciCrunch Registry

http://www.baltimorepkdcenter.org/clinical/index.shtml

Core facility that provides clinical applications and methods to make kidney research translational and applicable to care settings.

Proper citation: Baltimore Polycystic Kidney Disease (PKD) Research and Clinical Core Center Clinical and Translational Core Resource (RRID:SCR_015291) Copy   

•   Source: SciCrunch Registry

http://www.baltimorepkdcenter.org/antibody/index.shtml

Core which supports the work of the Baltimore Polycystic Kidney Disease research center by providing antibody validation services and vectors to researchers.

Proper citation: Baltimore Polycystic Kidney Disease (PKD) Research and Clinical Core Center Antibody Validation and Vector Core (RRID:SCR_015318) Copy   

•   Source: SciCrunch Registry

http://archives.niddk.nih.gov/patient/crisp/rp-crisp.aspx

A five-year prospective cohort study following 240 patients who have autosomal-dominant polycystic kidney disease (PKD) to determine whether changes in anatomic characteristics of their kidneys as measured by magnetic resonance imaging will be useful in providing surrogate measures for disease progression. CRISP's overall goal is to develop methods that would facilitate shortening the observation period necessary to determine efficacy of treatment interventions in PKD patients. Specific goals of this study are to: * Quantify cyst growth and ascertain severity of renal parenchymal involvement by sequential measurement of total kidney volume and the ratio of intact parenchyma to renal parenchyma occupied by cysts over time * Establish useful clinical correlations of imaging data with other markers of disease progression * Identify and test other potential markers or indices of disease progression, for example, assessment of loss of heterozygosity of renal cells shed in the urine, or other markers, in cohorts of patients with PKD * Gain information about the cost-effectiveness, patient acceptability, and advantages and disadvantages of different imaging techniques used serially in patients with PKD. Some experience has been gained in establishing that repeat imaging of the same PKD patient, using these techniques, yields reproducible estimates of kidney size and the proportion of renal parenchyma occupied by cysts. MRI may also have the advantage of permitting simultaneous estimation of GFR. Ultrasound has the advantage of being more cost-effective and perhaps more acceptable to patients for repetitive studies, but the measurements may be less accurate and reproducible. Nonetheless, there is very limited experience in applying these techniques to follow progression of the renal disease. Development of improved, reproducible imaging methods that assess cyst growth and provide markers of disease progression could markedly improve the feasibility of clinical trials. Participating clinical centers are Emory University, the Mayo Clinic, University of Kansas, and the University of Alabama at Birmingham. The data coordinating and imaging analysis center is at Washington University. (PI has since moved to University of Pittsburgh) The study found that kidney enlargement resulting from the expansion of cysts is continuous, quantifiable, and associated with the decline of renal function. Cystic expansion occurs at a consistent rate per individual, although it is heterogeneous in the population, and that larger kidneys are associated with more rapid decrease in renal function. These anatomic characteristics of patient kidneys may provide useful surrogate measures for disease progression, and hence enhance the development of targeted therapies for autosomal dominant PKD. CRISP III is a five-year prospective cohort study to follow ~170 remaining autosomal dominant polycystic kidney disease (ADPKD) patients who were part of the original CRISP cohort study. CRISP III will verify and extend the preliminary observations of CRISP to determine the extent to which quantitative (kidney volume and blood flow, and hepatic and kidney cyst volume) or qualitative (cyst distribution and character) structural parameters predict renal insufficiency and develop and test new metrics to quantify and monitor disease progression. Urine metabolites and the genome will be correlated with the progression of disease to look for new, predictive disease biomarkers. This information from CRISP III will help determine if the kidney enlargement, blood flow, cyst distribution, or urine metabolites can function as an informative surrogate measure for disease progression.

Proper citation: Consortium for Radiologic Imaging Studies of Polycystic Kidney Disease (RRID:SCR_000690) Copy   

•   Source: SciCrunch Registry

http://www.humgen.rwth-aachen.de/

Catalog of all changes detected in PKHD1 (Polycystic Kidney and Hepatic Disease 1) in a locus specific database. Investigators are invited to submit their novel data to this database. These data should be meaningful for clinical practice as well as of relevance for the reader interested in molecular aspects of polycystic kidney disease (PKD). There are also some links and information for ARPKD patients and their parents. Autosomal recessive polycystic kidney disease (ARPKD/PKHD1) is an important cause of renal-related and liver-related morbidity and mortality in childhood. This study reports mutation screening in 90 ARPKD patients and identifies mutations in 110 alleles making up a detection rate of 61%. Thirty-four of the detected mutations have not been reported previously. Two underlying mutations in 40 patients and one mutation in 30 cases are disclosed, and no mutation was detected on the remaining chromosomes. Mutations were found to be scattered throughout the gene without evidence of clustering at specific sites. PKHD1 mutation analysis is a powerful tool to establish the molecular cause of ARPKD in a given family. Direct identification of mutations allows an unequivocal diagnosis and accurate genetic counseling even in families displaying diagnostic challenges.

Proper citation: Autosomal Recessive Polycystic Kidney Disease Mutation Database (RRID:SCR_002290) Copy   

•   Source: SciCrunch Registry

https://www.pkd-rrc.org

Consortium develops and shares investigative resources, reagents and expertise with broader research community to accelerate innovation and discovery in field of polycystic kidney disease.Provides assistance with protocols and trouble shooting. Provides funding opportunities.

Proper citation: Polycystic Kidney Disease Research Resource Consortium (RRID:SCR_022033) Copy   

•   Source: SciCrunch Registry

http://www.mayo.edu/research/centers-programs/molecular-genetics-proteomics-core/overview

Core services include mutation screening of cell lines derived from ADPKD patients, mutation screening of large, typical ADPKD populations, genetic screening of atypical PKD families, cystic Kidney and Liver Disease Biobank (CKLBB) from ADPKD patients, and urine collection and fractionation.

Proper citation: Translational Polycystic Kidney Disease (PKD) Center at Mayo Clinic Rochester Molecular Genetics and Biomarker Core (RRID:SCR_015308) Copy   

•   Source: SciCrunch Registry

http://www.baltimorepkdcenter.org/mouse/index.shtml

Core facility which provides mouse models and a biobank of tissues and other materials for research.

Proper citation: Baltimore Polycystic Kidney Disease (PKD) Research and Clinical Core Center Mouse Models and Biobank (RRID:SCR_015319) Copy   

•   Source: SciCrunch Registry

http://www.baltimorepkdcenter.org/cell/index.shtml

Core faiclity that provides researchers with cell culturing and engineering services.

Proper citation: Baltimore Polycystic Kidney Disease (PKD) Research and Clinical Core Center Cell Culture and Engineering (RRID:SCR_015323) Copy   

•   Source: SciCrunch Registry

http://www.mayo.edu/research/centers-programs/model-systems-core/overview

Core that makes available PKD model systems and technologies to PKD researchers at Mayo and at other institutions. Its services include C. elegans PKD-targeted services, Zebrafish PKD-targeted services, and Rodent PKD-targeted services.

Proper citation: Translational Polycystic Kidney Disease (PKD) Center at Mayo Clinic Rochester Model Systems Core (RRID:SCR_015312) Copy   

•   Source: SciCrunch Registry

http://rgd.mcw.edu/rgdCuration/?module=portal&func=show&name=renal

An integrated resource for information on genes, QTLs and strains associated with a variety of kidney and renal system conditions such as Renal Hypertension, Polycystic Kidney Disease and Renal Insufficiency, as well as Kidney Neoplasms.

Proper citation: Renal Disease Portal (RRID:SCR_009030) Copy   

•   Source: SciCrunch Registry

https://clinicaltrials.gov/study/NCT01885559

Consortium established to design and implement clinical trials of treatments that might slow the progressive loss of renal function in Polycystic Kidney Disease (PKD). Two multicenter randomized, double-blind, placebo controlled clinical trials are running concurrently to study the efficacy of renin-angiotensin-aldosterone system blockade on the progression of cystic disease (kidney volume) and on the decline in renal function in autosomal dominant polycystic kidney disease (ADPKD). Study A is to study whether intensive ACE-I/ARB blockade decrease the progression of cystic disease compared to ACE-I monotherapy patients with early disease, relatively preserved renal function, and high-normal BP or hypertension. Study B is to study whether intensive ACE-I/ARB blockade as compared to ACE-I monotherapy slow the decline in kidney function, end-stage of renal disease, or death in the setting of standard blood pressure control in hypertensive patients with moderately advanced disease.

Proper citation: HALT PKD (RRID:SCR_001529) Copy   

•   Source: SciCrunch Registry

https://www.pkdcure.org/

Organization and funder of polycystic kidney disease research to find treatments. The organization also raises awareness for the disease through education, advocacy and support.

Proper citation: PKD Foundation (RRID:SCR_000209) Copy   

•   Source: SciCrunch Registry