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http://www2.bsc.gwu.edu/bsc/oneproj.php?pkey=28

THIS RESOURCE IS NO LONGER IN SERVICE. Documented on July 31,2025. Collect, store, and distribute genetic samples from cases and controls of type 1 diabetes and diabetic nephropathy for investigator-driven research into the genetic basis of diabetic nephropathy. As the risk of kidney complications in type 1 diabetes appears to have a considerable genetic component, this study assembled a large data resource for researchers attempting to identify causative genetic variants. The types of data collected allowed traditional case-control testing, a rapid and often powerful approach, and family-based analysis, a robust approach that is not influenced by population substructure.

Proper citation: Genetics of Kidneys in Diabetes (RRID:SCR_000133) Copy   

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http://www.statepi.jhsph.edu/ckid/

Prospective, observational cohort study of children with mild to moderate chronic kidney disease (CKD) to: (1) determine risk factors for progression of pediatric chronic kidney disease (CKD); (2) examine the impact of CKD on neurocognitive development; (3) examine the impact of CKD on risk factors for cardiovascular disease, and; (4) examine the impact of CKD on growth. The CKiD study population will include a cohort of 540 children, age 1 16 years, expected to be enrolled over a 24-month period.

Proper citation: CKID A Prospective Cohort Study of Kidney Disease in Children (RRID:SCR_001500) Copy   

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https://www.kidney.org/

Organization in the U.S. dedicated to the awareness, prevention and treatment of kidney disease. Initiatives include public and professional education, kidney health screenings, research, and patient services. They publish a number of scientific journals including the American Journal of Kidney Diseases, Advances in Chronic Kidney Disease and the Journal of Renal Nutrition. The NKF also publishes the Kidney Dialysis Outcomes Quality Initiative K/DOQI, a comprehensive set of clinical practice guidelines. (Adapted from Wikipedia)

Proper citation: National Kidney Foundation (RRID:SCR_003990) Copy   

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http://c-path.org/programs/pkd/

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

Proper citation: Polycystic Kidney Disease Outcomes Consortium (RRID:SCR_003674) Copy   

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http://www.utsouthwestern.edu/research/core-facilities/obrien-kidney/core-services/clinical-translational-core.html

Core whose aim is to translate basic science research into effective diagnostic and therapeutic strategies that will improve the lives of patients by interrupting the pathogenesis of chronic kidney disease and its attendant high risk of cardiovascular disability and death. It combines comprehensive human genetics with phenotyping of subjects.

Proper citation: George M. O'Brien Kidney Research Core Center - UT Southwestern Medical Center Clinical and Translational Core (RRID:SCR_015295) Copy   

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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   

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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   

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http://archives.niddk.nih.gov/patient/aask/aask.aspx

Clinical trial investigating whether a specific class of antihypertensive drugs (beta-adrenergic blockers, calcium channel blockers, or angiotensin converting enzyme inhibitors) and/or the level of blood pressure would influence progression of hypertensive kidney disease in African Americans. The initiative consisting of 21 clinical centers and a data-coordinating center is followed by a Continuation of AASK Cohort Study to investigate the environmental, socio-economic, genetic, physiologic, and other co-morbid factors that influence progression of kidney disease in a well-characterized cohort of African Americans with hypertensive kidney disease. Only patients who were previously in the randomized trial are eligible for the cohort study. A significant discovery was made in the treatment strategy for slowing kidney disease caused by hypertension. Angiotensin-converting enzyme (ACE) inhibitors, compared with calcium channel blockers, were found to slow kidney disease progression by 36 percent, and they drastically reduced the risk of kidney failure by 48 percent in patients who had at least one gram of protein in the urine, a sign of kidney failure. ACE inhibitors have been the preferred treatment for hypertension caused by diabetes since 1994; however, calcium channel blockers have been particularly effective in controlling blood pressure in African Americans. The AASK study now recommends ACE inhibitors to protect the kidneys from the damaging effects of hypertension. The Continuation of AASK Cohort Study will be followed at the clinical centers. The patients will be provided with the usual clinical care given to all such patients at the respective centers. Baseline demographic information, selected laboratory tests, and other studies are being obtained at the initiation of the Continuation Study. The patients will be seen quarterly at the centers, and some selected studies done at these visits. Samples will be obtained and stored for additional studies and analyses at a later date.

Proper citation: AASK Clinical Trial and Cohort Study (RRID:SCR_006985) Copy   

•   Source: SciCrunch Registry

https://www.cbinsights.com/company/thrasos-therapeutics

Private, clinical stage biotherapeutics company focused on delivering new solutions to individuals affected by kidney disease. They are committed to developing novel approaches to protect, treat and restore kidney function for this patient group. Company has designed specific class of peptide compounds that have shown excellent results in controlling experimental kidney diseases, notably, models of diabetic nephropathy (kidney damage associated with diabetes), and acute kidney injury. These proprietary peptides may therefore be able to prevent and treat acute kidney injury, as well as slow and possibly reverse the progression of diabetic nephropathy. They act to control apoptosis (programmed cell death), inflammation and fibrosis (formation of scar tissue).

Proper citation: Thrasos Therapeutics (RRID:SCR_004052) Copy   

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http://www.capitalbiosciences.com/

Biological products including Cell Immortalization Products, Clinically Defined Human Tissue, cDNA ORF Clones, Premade Adenoviruses, Purified Proteins, Viral Expression Systems and others as well as services like Custom Recombinant Adenovirus Production, Custom Recombinant Lentivirus Production, Protein Detection and Quantification and Stable Cell Line Production for academic and governmental research institutes, pharmaceutical and biotechnology industry. Capital Biosciences offers most types of human tissues, normal and diseased, with extensive clinical history and follow up information. Standard specimen format: Snap-frozen(flash-frozen), Formalin fixed and paraffin embedded (FFPE) tissues, Blood and blood products, Bone marrow, Total RNA, Genomic DNA, Total Proteins, Primary cell cultures, Viable frozen tissue. Tumor tissue samples include: Bladder cancer, Glioblastoma, Medulloblastoma, Breast Carcinoma, Cervical Cancer, Colorectal Cancer, Endometrial Cancer, Esophageal Cancer, Head and Neck (H&N) Carcinoma, Hepatocellular Carcinoma (HCC), Hodgkin's lymphoma, Kidney, Renal Cell Carcinoma, Lung Cancer, Non-Small Cell (NCSLC), Lung Cancer, Small Cell (SCLC), Melanoma, Mesothelioma, non-Hodgkin's Lymphoma, Ovarian Adenocarcinoma, Pancreatic Cancer, Prostate Cancer, Stomach Cancer.

Proper citation: Capital Biosciences (RRID:SCR_004879) Copy   

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http://www.fastbiomedical.com/

A clinical stage company developing a timely, precise, and convenient method for measuring plasma volume and glomerular filtration rate (GFR). They focus on development and commercialization of a patented technology for quantifying clinically relevant parameters that have been challenging or impossible to measure in the past. The company is currently developing technology for quantifying volume status and kidney function in a clinically actionable timeframe. Their technology could have a significant impact on the treatment of patients with acute kidney injury (AKI) and chronic kidney disease (CKD).

Proper citation: FAST BioMedical (RRID:SCR_003983) Copy   

•   Source: SciCrunch Registry

http://www.davita.com/

Healthcare company. Commercial dialysis provider with offerings that include in-center hemodialysis, in-center nocturnal dialysis, peritoneal dialysis, home hemodialysis, vascular access management, chronic kidney disease education, and renal diet assistance. Information on dialysis and chronic kidney disease, including informative articles and animated learning modules, and recipes for the dialysis diet are also available. Take advantage of their discussion forum, Find a Dialysis Center tool, DaVita GFR Calculator and more.

Proper citation: DaVita (RRID:SCR_003980) Copy   

•   Source: SciCrunch Registry

http://medibeacon.com/

A commercial optical diagnostic company focused on providing clinicians with critical information to improve patient care. The Optical Renal Function Monitor (ORFM) is their first product platform and is focused on real-time, easy to use, and cost-effective monitoring of kidney function. Their non-invasive monitoring technology works in a similar fashion to pulse oximetry by using a light sensor placed on the skin. After the sensor has been placed, a proprietary biocompatible tracer is administered. The system can then monitor the patient''s real-time point-of-care kidney function. This information will allow for earlier detection of renal issues enabling clinicians to provide earlier, and hence more effective interventions. MediBeacon has created a research grade technique that is clinically applicable for real-time point-of-care Glomerular Filtration Rate measurement (mGFR). MediBeacon has invented a fluorescent tracer agent (MB-102) that is removed from the blood exclusively by the GFR mechanism of the kidneys. Together with their non-invasive detection device, this will deliver a real-time point-of-care measurement of GFR.

Proper citation: MediBeacon (RRID:SCR_003987) Copy   

•   Source: SciCrunch Registry

http://www.vasamd.org/

Society devoted to the advancement of the field of dialysis access through research, education and advocacy for patients with end stage kidney disease. They provide vascular access education for physicians, nurses, and other health care professionals and advocate for evidenced-based best clinical practices.

Proper citation: Vascular Access Society of the Americas (RRID:SCR_004058) Copy   

•   Source: SciCrunch Registry

http://www.asdin.org/

Society that aims to promote the proper application of new and existing procedures to improve the care of patients with kidney disease. They promote education, research, public policy and clinical practice initiatives relating to diagnostic and interventional procedures. ASDIN works closely with other societies and programs to achieve its goals. All professionals involved in the care of patients with kidney disease are welcome to join and become active in the Society. Activities of the Society include: * the establishment of practice standards, * certification of physicians in specific procedures, * accreditation of training programs in specific procedures, * development of training tools and techniques, * sponsoring symposia and training courses, * and the dissemination of information through periodic meetings and through print and other media.

Proper citation: American Society of Diagnostic and Interventional Nephrology (RRID:SCR_003968) Copy   

•   Source: SciCrunch Registry

http://www.aspneph.com/

An organization of pediatric nephrologists and affiliated health care professionals to promote optimal care for children with kidney disease through advocacy, education and research; and to disseminate advances in clinical practice and scientific investigation.

Proper citation: American Society of Pediatric Nephrology (RRID:SCR_003969) Copy   

•   Source: SciCrunch Registry

https://repository.niddk.nih.gov/home/

NIDDK Central Repositories are two separate contract funded components that work together to store data and samples from significant, NIDDK funded studies. First component is Biorepository that gathers, stores, and distributes biological samples from studies. Biorepository works with investigators in new and ongoing studies as realtime storage facility for archival samples.Second component is Data Repository that gathers, stores and distributes incremental or finished datasets from NIDDK funded studies Data Repository helps active data coordinating centers prepare databases and incremental datasets for archiving and for carrying out restricted queries of stored databases. Data Repository serves as Data Coordinating Center and website manager for NIDDK Central Repositories website.

Proper citation: NIDDK Central Repository (RRID:SCR_006542) Copy   

•   Source: SciCrunch Registry

https://glomcon.org

Consortium to bring together clinicians, pathologists, researchers, and biotech innovators to create scalable network of stakeholders interested in helping patients with glomerular kidney disease. Makes collective expertise of its members available for discussion of individual cases, provides infrastructure for biomarker studies, enables genomic research, and facilitates clinical trials.

Proper citation: Glomerular Disease Study & Trial Consortium (RRID:SCR_017264) Copy   

•   Source: SciCrunch Registry

http://www.nncc-exam.org/

Organization that established credentialing mechanisms to promote patient safety and to improve the quality of care provided to nephrology patients. There is a diversity of examinations providing the opportunity for certification at various levels of education, experience, and areas of practice within nephrology nursing. All of the certification examinations are endorsed by American Nephrology Nurses'''' Association (ANNA). The Commission recognizes the value of education, administration, research, and clinical practice in fostering personal and professional growth and currently provides six examinations to validate clinical performance: * The Certified Dialysis Nurse examination * The Certified Dialysis LPN/LVN examination * The Certified Nephrology Nurse examination * The Certified Clinical Hemodialysis Technician * The Certified Clinical Hemodialysis Technician - Advanced * The Certified Nephrology Nurse - Nurse Practitioner

Proper citation: Nephrology Nursing Certification Commission (RRID:SCR_003994) Copy   

•   Source: SciCrunch Registry

http://clinicaltrials.gov/show/NCT00143949

Randomized, multicenter, double-blind study to determine if renin angiotensin medications, either losartan (angiotensin II blocker) or enalapril (converting enzyme inhibitor), can prevent or delay the onset of diabetic kidney disease in patients with type 1 diabetic patients who do not have hypertension, diabetic nephropathy, or predictive levels of microalbuminuria. Two hundred eight five patients ages 16-61 with 2-20 yrs of Type 1 Diabetes Mellitus and no renal functional abnormalities were randomized into a parallel, double-blind, placebo-controlled study involving 3 groups (95 patients/group). Each group received an angiotensin-converting enzyme inhibitor (ACEI) (enalapril), or an angiotensin II receptor blocker (Losartan), or placebo. All patients had their usual Diabetes Mellitus (DM) management. Baseline studies included measures of glomerular filtration rate (GFR), urinary albumin excretion rate (UAE), blood pressure (BP), and a percutaneous renal biopsy. Patients were followed by quarterly measures of BP, HbA1C, UAE, and drug compliance. There were annual measures of GFR and a repeat renal biopsy after 5 yrs in the study. The main endpoint is kidney structural changes over time, especially mesangial fractional volume (v(Mes/glom)). Secondary endpoints will be other DN structural measures and measures of kidney function (UAE, GFR). These studies will determine whether rennin angiotensin system blockage in the early stages of DN can prevent the early kidney structural changes in this important disorder. Ancillary studies will evaluate the effects of treatment group on the development and progression of diabetic retinopathy and will develop predictors of study participants'''' compliance. Baseline, 2.5 and 5 year retinal fundus photographs in the RASS patients were obtained.

Proper citation: Renin Angiotensin System Study (RRID:SCR_013385) Copy   

•   Source: SciCrunch Registry