Cure Glomerulonephropathy (CureGN) Network

Funding Source: National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), NephCure Kidney International

Cure Glomerulonephropathy (CureGN) is a multicenter five-year cohort study of glomerular disease patients funded by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) at the National Institutes for Health (NIH).

The CureGN project will study 2,400 children and adults with the following glomerular diseases: minimal change disease (MCD), focal segmental glomerulosclerosis (FSGS), membranous nephropathy (MN), and IgA nephropathy (IGAN).

Participants will be followed longitudinally to better understand the causes of disease, response to therapy, and disease progression, with the ultimate objective to cure glomerulonephropathy. The UNC Kidney Center is one of four Primary Clinical Centers (PCC) leading the efforts of the project, and will begin enrollment in January. Each PCC will recruit 600 participants.

The UNC PCC is led by Primary Investigator Ron Falk, MD, Lead Co-Investigator Julie McGregor, MD and Lead Study Coordinator Caroline Poulton, MSW. As one of the PCCs, UNC also will oversee four sub sites: University of Alabama at Birmingham, Vanderbilt University, Virginia Commonwealth University, and Hôpital Maisonneuve-Rosemont/University of Montreal.

Study participants will be followed longitudinally, with collection of clinical data and biological specimens, to better understand the causes of disease, response to therapy, and disease progression. The goal of this registry is to provide an infrastructure to allow research that will ultimately cure glomerulonephropathy and answer the questions commonly asked by patients that we are still unable to adequately answer:.

“What is this disease?”
“Why do I have this disease?”
“What will happen to me?”
“What effective treatments can you offer me?”

This study is a first of its kind, due to the size and collaborative nature of the project. Current funding is for four years, but it is hoped that this registry will continue to collect data for decades and be the ultimate resource for research on patients with these diseases.

CureGN has been funded by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) at the National Institutes for Health (NIH) and by NephCure Kidney International.

To read more about the study please visit or contact Caroline Poulton at .

Nephrotic Syndrome Study Network (NEPTUNE)

Funding Source: National Institutes of Health, Office of Rare Diseases, NephCure Kidney International, University of Michigan

The Nephrotic Syndrome Study Network (known as NEPTUNE) brings together physician scientists at 22 research consortia in the United States and Canada, along with the patient advocacy groups, NephCure Kidney International and the Halpin Foundation, to advance research on the diseases that define nephrotic syndrome (NS). Already, NEPTUNE has collected longitudinal, biological material and detailed clinical data from more than 450 NS research participants, and has supported pilot and ancillary studies utilizing the NEPTUNE data resources.

The research questions are:

    1. What are the underlying causes of FSGS, MCD and MN?
    2. What are the most effective treatments for each disease?
    3. What is the most useful way to classify these diseases in order to encourage scientific discovery and to inform the selection the most effective treatments?
    4. How does the disease and treatment affect the way a patient feels?
    5. How common or uncommon are complications of nephrotic syndrome?
    6. Can new blood and urine tests be developed to help predict how well a patient will respond to treatment?

    Now in the second 5-year funding cycle, NEPTUNE continues to recruit more research participants as well as to continue to support training and research programs for scientists and clinicians. You can find information on the NEPTUNE Ancillary Studies Program and grant and fellowship programs on this website.

    The UNC clinical center is led by Patrick Nachman, MD and Keisha Gibson, MD.

    To learn more please visit or contact Anne Froment at

    ANCA Glomerulonephritis: From Molecules to Man

    Funding Source: National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

    Glomerulonephritis and vasculitis caused by anti-neutrophil cytoplasmic autoantibodies (ANCA) Is the most common form of rapidly progressive glomerular disease. The objective of this project is to improve the lives of patients with ANCA disease by elucidating the underlying immunologic and pathogenic mechanisms, and translating this knowledge into improved patient care.

    The grant, which has been ongoing for over fifteen years, is comprised of four projects, a clinical core and an administrative core. Project 1 investigates epigenetic regulation of neutrophil genes, and genes that modify the phenotype of ANCA disease. Project 2 explores the biology of relapse and remission in a unique cohort of ANCA disease patients from the perspective of epigenetic regulation of autoantigen genes, B cell auto reactivity and T cell dysregualtion. Project 3 uses animal models of ANCA disease to study Involvement of the alternative complement pathway and Fcy receptors in pathogenesis. Induction of disease by different antigens, and the genetic basis for variations in disease severity. Project 4 provides translation of our more basic research into clinical investigations to Improve ANCA disease outcomes. We will take advantage of our discoveries of pathogenic roles for epigenetic regulation and complement activation by treating patients with retinoic acid to alter myeloid gene expression and with antl-C5 antibodies to block complement activation. As an extension of the discovery of anti-plasminogen antibodies while studying autoantigen complementarity, we will determine if venous thrombosis in ANCA disease patients is attributable to these antibodies. The Clinical Core is key to our studies and has allowed us to follow patients with ANCA disease for almost a quarter century. From this valuable patient cohort, we have obtained crucial clinical and pathological Information, and biological specimens. An Administrative Core provides underpinnings of our work. There is substantial synergy among all projects, each projects focus on ANCA disease from different perspectives, and the hypotheses can be tested in human and animal systems. Importantly, the lessons we are learning pertain not only to ANCA disease but also to autoimmunity and Inflammation in general.

    Project leaders include, J. Charles Jennette, MD, Kenneth M. Brinkhous Distinguished Professor and Chair, Department of Pathology and Laboratory Medicine, Dominic Ciavatta, PhD, of the Department of Genetics, Donna Bunch, PhD, Assistant Professor of Research, UNC Kidney Center, Patrick Nachman, MD, Professor of Medicine, UNC Kidney Center and Susan Hogan, PhD, MPH, Associate Professor of Research, UNC Kidney Center.

    Phenotypes of Diabetic Kidney Disease and the Relationship to Retinopathy

    Funding Source: National Institute of Diabetes, Digestive and Kidney Diseases (NIDDK)

    Dr. Amy Mottl is the recipient of this career development award aimed at defining the relationship between diabetic complications of the eye (retinopathy) and kidney. The purpose of this is to determine whether there are finding within the eye that can tell us about the severity and type of damage being experienced in the kidney.

    Environmental factors are being analyzed to determine whether they change the relationship between the kidney and retinal disease caused by diabetes. Factors being analyzed include age, sex, ethnicity/race, type of diabetes and duration of diabetes. Two large studies of patients with diabetes and very different characteristics are being analyzed. The ACCORD Study is a large clinical trial of different treatments for delaying the progression of cardiovascular disease in older patients with type 2 diabetes at high risk for heart attacks and strokes. The SEARCH for Diabetes in Youth Study is a large, observational study of children and adolescents recently diagnosed with either type 1 or type 2 diabetes and followed from over a long period of time.

    A third part of this grant is to acquire pilot data on the relationship between kidney tissue histology and findings in the retina. This study involves research protocol kidney biopsies, measurement of kidney function and photographs of the retina. The goal is for these data is to provide preliminary information about the optimal ways to collect the data for a larger, more comprehensive study.