The Nephrology Section is one of clinical research centers for the MidWest Pediatric Nephrology Consortium (MWPNC), an important sponsored, multi-center network with the overall goal of evaluating new and existing treatments and management approaches for children with kidney disease. Within MWPNC, the section is a leading center on Crescentic Glomerulonephritis study. The section is actively involved in the North American Pediatric Renal Trials and Collaborative Studies (NAPPRTCS) and its benchmarking project, a multi-centered network following children after a kidney transplants, with chronic kidney disease(CKD), and end stage renal disease (ESRD) to understand each of these disease processes for the goal of improving care. The section is also a participating institution in the Standards of Care to Improve Outcomes in Pediatric End Stage Renal Disease (SCOPE). A multi-centered, quality collaborative network to prevent dialysis related infections in children.
Chronic Kidney Disease in Children Prospective Cohort Study (CKiD)
An NIH-funded, prospective, epidemiological study of children with chronic kidney disease. The primary goals of this study are to determine the risk factors for decline in kidney function and to define how a progressive decline in kidney function impacts neurocognitive function and behavior; the risk factors for cardiovascular disease; and growth failure and its associated morbidity.
ACTH (AdrenoCorticoTropic Hormone) for Frequently Relapsing and Steroid Dependent Nephrotic Syndrome
A multi-centered, randomized trial of ACTH gel for children with frequently relapsing or steroid dependent nephrotic syndrome to study the effects of ACTH on this disease and its side effects, by comparing how patients do on ACTH treatment versus no treatment. The expectation is that ACTH gel will be superior to no treatment in maintaining remission in children with frequently relapsing or steroid dependent nephrotic syndrome.
An observational, non-interventional, multi-center, multi-national study of patients with Atypical Hemolytic-Uremic Syndrome (aHUS Registry)
A multi-centered study to collect and evaluate safety and effectiveness data specific to the use of eculizumab in aHUS patients. The aHUS Registry will assess the long term manifestations of thrombotic microangiopathy complications of aHUS, as well as other clinical outcomes regarding morbidity and mortality in aHUS patients receiving eculizumab treatment or other disease management.
Childhood Nephrotic Syndrome Observational Study
A NIH, multi-centered study to identify and characterize the features, including race, socioeconomic status, disease characteristics that contribute to the variability in the clinical response to routine therapies in children with idiopathic nephrotic syndrome. Additionally, to define the short-term and long-term morbidity and mortality in children with idiopathic nephrotic syndrome, to identify risk factors for increased morbidity and mortality, perform genome wide association study (GWAS) to define common disease loci for childhood onset idiopathic nephrotic syndrome, and to collect biological samples for current and future research projects.
Genetic, genomic, and biomarker studies of Henoch-Schönlein purpura and IgA nephropathy in kids. (GiGa Study)
A multi-centered genetic investigations of children affected by IgAN and Henoch-Schönlein purpura (HSP) without or with nephritis (HSPN), two IgA-related syndromes with kidney and skin manifestations. This study hopes to discover new genetic and biomarker predictors of these diseases in children.
Retrospective Review of Acute Crescentic Glomerulonephritis (ACGN) in Children
An observational, non-interventional, multi-center, retrospective study of children and adolescents with crescentic glomerulonephritis (CrGN). The chart review will help us describe the patterns of clinical presentation, to determine the clinical and tissue evaluation of disease, to describe both the initial and subsequent treatments and evaluate the long-term outcomes for this disease.
Cure Glomerulonephropathy Network (CureGN)
This is an NIH and NephCure sponsored studuy aimed to establish a longitudinal database of patients with glomerular disease to facilitate the development of translational and clinical ancillary studies that will advance the diagnosis and care of these patients. Specifically, the study will collect long-term data and kidney samples in 2,400 adult and pediatric patients with biopsy-documented Immunoglobulin A Nephropathy, Focal Segmental Glomerulosclerosis, Membranous Nephropathy, and Minimal Change Disease.
Safety and Efficacy of Hectorol in Pediatric Patients With Chronic Kidney Disease Stage 3 and 4 With Secondary Hyperparathyroidism Not Yet on Dialysis
A randomized, open label study to evaluate the effect of Hectorol® capsules in reducing elevated levels of intact parathyroid hormone (iPTH) in pediatric patients with secondary hyperparathyroidism due to kidney disease. Hectorol will be compared to Rocaltrol. Both Hectorol and Rocaltrol dosing will be titrated to individualized iPTH patient level management.
Single Arm Study of ALXN1210 in Complement Inhibitor Treatment-Naive Children and Adolescent Patients with Atypical Hemolytic Uremic Syndrome (aHUS)
A single arm, open label, multi-centered study to assess the efficacy, tolerability, and safety of an investigative drug (ALXN1210) in children and adult patients with aHUS to inhibit complement-mediated thrombotic microangiopathy (TMA).
Pediatric Chronic Kidney Disease (CKD) in Eastern North Carolina (PeCKiDENC)
An outreach pediatric renal screening program to detect the prevalence of early chronic kidney disease (CKD) in pediatric populations ages 7-16 in eastern North Carolina.
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