The NephCure Foundation is dedicated to providing information and education for patients and families affected by nephrotic syndrome (NS) and focal segmental glomerulosclerosis (FSGS). In an effort to keep our constituency informed on recent scientific advances, NephCure has created the Research Update to provide the latest research news on NS and FSGS. Below, we have provided highlights of the full articles contained in the Research Update. Please note that the Research Update is a review of published research and abstracts presented at national and international nephrology conferences. This material is not specifically endorsed by the NephCure Foundation.
Working together to find answers: Nephrotic Syndrome Rare Diseases Clinical Research Consortium (NEPTUNE)
The establishment of a $10 million five year study, the Nephrotic Syndrome Rare Diseases Clinical Research Consortium, a multidisciplinary research and educational platform, to bring together clinical and translational scientists, and increase our knowledge of Glomerular diseases such as FSGS, and MCD...
What’s in your urine? The search for disease markers in Nephrotic Syndrome
the search for noninvasive test for early identification and classification of the type of kidney disease, to predict the severity and outcome as well as the patients’ response to treatment...
Quality of life in pediatric patients with FSGS
Insight into the quality of life of pediatric patients diagnosed with FSGS...
Adalimumab inhibits tumor necrosis factor (TNF), one of the major hormones produced by cells that induce inflammation. Inhibition of TNF is a possible pathway for treating FSGS, a promising strategy to slow or halt the decline in kidney function...
Management of childhood-onset nephrotic syndrome
An educational guideline to aid pediatric nephrologists in the treatment of primary NS in children, an effort in standardizing care for all children affected by NS, to improve care and patient outcome...
Characteristics of patients with FSGS, a look at the FSGS Clinical Trial
The FSGS Clinical Trial, a five year trial beginning in 2005, a glimpse into the characteristics of those children and young adults involved...
Is vitamin D a factor in kidney disease?
Vitamin D deficiency may be a key factor in the development of end stage kidney disease ( ESKD) in African Americans...
The other kind of steroid: Anabolic steroid abuse leads to FSGS
Development of aggressive forms of FSGS following long term use of anabolic steroids in 10 bodybuilders...
A link between soft drinks and kidney disease
Consumption of two or more servings per day of artificially sweetened soda associated with a two-fold increase in the risk for kidney function decline as described by researchers from Brigham and Women's Hospital....
TRPC6 mutations and Nephrotic Syndrome
Discovery of mutations in the gene TRPC6, encoding a calcium ion channel located on the cell membrane of podocytes (specialized cells in the involved in filtration), new research and the potential for future treatment...
Transplantation in patients with FSGS, long term outcomes and advances
Long term effects of kidney transplantation, recurrence of disease and the potential for preemptive kidney transplants in patients diagnosed with FSGS.
Mutations in INF2: A new discovery in FSGS genetics
Discovery that mutations in the gene INF2 results in FSGS through disruption of the structure of podocytes, specialized cells of the kidney involved in filtration results of genetic analysis in 11 families with FSGS......
European Collaborative FSGS Transplantation Study (ECoFTS)
In an attempt to further our understanding of FSGS, the European Collaborative FSGS Transplantation Study (ECoFTS), a multicenter study, has brought together researchers and physicians from hospitals around the world to evaluate the growing problem of FSGS internationally, targeting children with primary relapsing FSGS.
Rituximab, a clinical update
A current clinical look at the effects of the drug rituximab. While some positive results have been noted, further research into this possible rescue therapy is needed…
Evaluating the use of corticosteroids and cyclosporine in treatment of NS
While the negative effects of many of the available treatments for NS and FSGS can at times make us question their use, the prognosis may be much worse if these diseases are left untreated. These studies are a testament to the need for continued evaluation of commonly used therapies and of course for the continued effort in development of new treatments...
MYH9 gene, the high rate of FSGS in African Americans explained
Among the most significant discoveries of the past year was the identification of the MYH9 gene as the risk gene explaining the increased burden of kidney disease among African Americans who have been documented to have a five-fold higher risk for developing FSGS…
Galactose and the role of circulating permeability factors in FSGS
A number of studies examining the effects of new and adjunct medications have recently been presented. Galactose, a simple sugar, has garnered a great deal of attention as a potential treatment for steroid resistant FSGS. While limited, this research shows a positive role for galactose…
Fibrosis and FSGS, a review of the FONT study
There may be hope on the horizon with a category of drugs called antifibrotics, medications attempting to decrease or prevent development of scarring. A Phase I clinical trial was completed evaluating a previously used anti-diabetic drug, rosiglitazone, as an antifibrotic treatment for patients with FSGS…
Rituximab, a clinical update
Over the last five years there has been growing interest in the effect of the drug rituximab by both the scientific and lay communities. While some positive results have been noted, questions remain regarding the use of rituximab in the treatment of FSGS…
Beyond immunosuppression, a new role for cyclosporine
While new therapies are being examined, one traditionally used drug, Cyclosporine, is being reevaluated. Previously believed to function by suppressing the immune system, it is now thought to directly affect the podocytes, specialized cells of the kidney involved in filtration...
Exploring the growing numbers of FSGS nationally
There has been increasing evidence of a change in the pattern of glomerular diseases, specifically FSGS, both nationally and internationally. Studies of biopsied patients show an increasing incidence of FSGS in both adults and children regardless of race…
The financial burden and complications of nephrotic syndrome
As the incidence of FSGS is growing nationally, the percentage of complications as well as the cost of treatment in children is increasing as well. These children are at increased risk for complications resulting in an increase in length of hospital stay and associated hospital costs...
Long term outcome of nephrotic syndrome and FSGS in children
Questions remain regarding the long term outcome of these potentially devastating kidney diseases in children, a longitudinal review of two international kidney centers is provided…
If you would like to learn more about research funded by the NephCure Foundation, please visit the NephCure Virtual Center for Research, detailing a global network of researchers and research initiatives supported by Nephcure. To date, NephCure and friends have provided support to over 25 researchers and committed over $6 million to research. |
