Rare Kidney Diseases Receive Third Round of Funding

As originally reported in Michigan Medicine News, the Nephrotic Syndrome Study Network (NEPTUNE) has received their third five year cycle of funding to research rare kidney diseases. Right now, NEPTUNE is focusing on finding the right therapies for patients with these rare kidney diseases. This is a pressing need due to the harsh side effects and lengthened treatment time which causes additional pain for patients as their diseases continue to advance.

NEPTUNE’s Research Program

The program, funded by the National Center for Advancing Translational Sciences (NCATS) and the National Institute of Diabetes, Digestive and Kidney Diseases (NIDDK), specifically selects patients with focal segmental glomerulosclerosis (FSGS), minimal change disease (MCD), and membranous nephropathy (MN). The project tries to find the causes of the diseases, what makes it progress, and new therapies. The rare kidney diseases cause intensive suffering as they often cause kidney function loss, additional health problems, and heavy side effects from often incorrect medications.
The kidney disease community is frustrated by the current method of diagnosis and care which tend to be imprecise in classification. Often because of this lack of clarity, the individual’s case is not understood. Therapies must be trialed before knowing how the patient will respond to the specific therapy. These therapies tend to cause painful side effects which these patients receive unnecessarily.

The Current Research Goals

NEPTUNE is trying to improve this with programs that more precisely capture patient details and the complexity of how the disease is affecting them. Their full medical history is filled in with information on their tissues, blood, urine, and live cells. Over the past 10 years, this project has included actors of all shapes and sizes, including scientists at 38 different centres around North America, patient advocacy groups, NephCure Kidney International, deep analyses on 750 patients, and the Halpin Foundation.
The current trials are specifically looking at patients with nephrotic syndrome (symptoms of kidney damage) and the wide ranging effects it has on the patients’ total medical profile. With all of the accumulating knowledge on the disease, NEPTUNE plans to transition their project from one of research accumulation to seeking solutions and therapies. They will find what triggers the disease in an individual and match it with their treatment in trials. The medical department thinks this will be tremendously impactful for the community, as they finally have a new method to find the specific treatment option better. By finding the right drugs for these patients, the project will have met a huge goal: decreasing suffering for those with rare kidney diseases.

What are your thoughts on the findings from this study? Share your stories, thoughts, and hopes with the Patient Worthy community!

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