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URL: http://c-path.org/programs/pkd/
Proper Citation: Polycystic Kidney Disease Outcomes Consortium (RRID:SCR_003674)
Description: Consortium to develop evidence supporting the use of imaging Total Kidney Volume (TKV) as a prognostic biomarker that predicts the progression of Autosomal Dominant Polycystic Kidney Disease (ADPKD) to select patients likely to respond to therapy into clinical trials. It aims to replace the currently used measurement of glomerular filtration rate (GFR). Scientists will use the data collected to develop a disease progression model that will evaluate the relationship between TKV and the known complications of ADPKD, including rate of loss of kidney function, hypertension, gross hematuria, kidney stones, urinary tract infections, development of end-stage renal disease, and mortality. These analyses will be used to support the regulatory qualification of TKV as an accepted measure for assessing the progression of ADPKD in clinical trials in which new therapies are tested. PKDOC has the following goals: # Develop standard clinical data elements and definitions that are specific to ADPKD # Create a database of aggregated data from existing multiple, longitudinal, and well-characterized research registries maintained over decades by the leading institutions in ADPKD clinical investigation # Advance and harmonize the missions of regulatory agencies by creating tools that help with the evaluation of new pharmaceutical compounds # Develop a quantitative disease progression model to examine the linkage between TKV and disease outcomes
Abbreviations: PKDOC
Synonyms: PKD Outcomes Consortium, PKD Consortium, Polycystic Kidney Disease (PKD) Outcomes Consortium
Resource Type: portal, consortium, organization portal, data or information resource
Keywords: consortium, drug, imaging, total kidney volume, biomarker, rate, disease progression, imaging biomarker, drug development, kidney volume, kidney, clinical, common data element, therapeutic, clinical trial, standard specification, database
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