​​Endpoints and Outcome Measures

--Clinical--

• Comparing Kidney Health Outcomes in Children, Adolescents, and Adults with Focal Segmental Glomerulosclerosis​

• Proteinuria Reduction and Kidney Survival in Focal Segmental Glomerulosclerosis​

• An Outcomes-Based Definition of Proteinuria Remission in Focal Segmental Glomerulosclerosis

• Development of a Pediatric Adverse Events Terminology

• Estimating minimally important difference (MID) in PROMIS pediatric measures using the scale-judgment method

--Patient Reported Outcomes​--

• Health-Related Quality of Life in Focal Segmental Glomerular Sclerosis and Minimal Change Disease: A Qualitative Study of Children and Adults to Inform Patient-Reported Outcomes

• Responsiveness of the PROMIS® measures to changes in disease status among pediatric nephrotic syndrome patients: a Midwest pediatric nephrology consortium study

• Development of Focal Segmental Glomerulosclerosis Patient-Reported Outcome Measures: Symptom Diary and Symptom Impact Questionnaire

• Learning to live with nephrotic syndrome: experiences of adult patients and parents of children with nephrotic syndrome

• Patient-Reported Outcomes in Glomerular Disease

--Clinician Reported Outcomes​

• Developing an Edema Clinician-Reported Outcome Measure for Nephrotic Syndrome (coming soon!)

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Treatment Decision Making

• Association between psychiatric disorders and glomerular disease

• Time to initiation of anti-hypertensive therapy after onset of elevated blood pressure in patients with primary proteinuric disease

• Steroid-associated side effects in patients with primary proteinuric kidney disease

• Pediatric Immunization Practices in Nephrotic Syndrome: An Assessment of Provider and Parental Knowledge

• Provider perspectives on treatment decision-making in nephrotic syndrome

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MultiCenter Collaboration and Approaches for Progress

• A pediatric gateway initiative for glomerular disease: introducing PIONEER

• The Development and Use of an EHR-Linked Database for Glomerular Disease Research and Quality Initiatives

• NephCure Accelerating Cures Institute: A Multidisciplinary Consortium to Improve Care for Nephrotic Syndrome

• Optimizing Enrollment of Patients into Nephrology Research Studies

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​Population Health & Other Work

• The Health Economic Impact of Nephrotic Syndrome in the United States

• Validating a Computable Phenotype for Nephrotic Syndrome in Children and Adults Using PCORnet Data

• US Renal Data System 2017 Annual Data Report: Epidemiology of Kidney Disease in the United States

• Inpatient health care utilization in the United States among children, adolescents, and young adults with nephrotic syndrome

• Integrative Genomics Identifies Novel Associations with APOL1 Risk Genotypes in Black NEPTUNE Subjects.

• Complete Remission in the Nephrotic Syndrome Study Network

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​Clinical Trials

• Randomized Clinical Trial Design to Assess Abatacept in Resistant Nephrotic Syndrome

• Efficacy and Safety of Sparsentan Compared With Irbesartan in Patients With Primary Focal Segmental Glomerulosclerosis: Randomized, Controlled Trial Design (DUET)

• Assessing the Impact of Losmapimod on Proteinuria in Idiopathic Focal Segmental Glomerulosclerosisis

• Changing the Paradigm for the Treatment and Development of New Therapies for FSGS

• Analyzing and Interpreting Clinical Trials

• Randomized, Controlled Trial of Rituximab in IgA Nephropathy with Proteinuria and Renal Dysfunction

• A Multicenter Randomized Controlled Trial of Rituximab versus Cyclosporine in the Treatment of Idiopathic Membranous Nephropathy (MENTOR)

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