Research News! 

Reducing protein in urine for patients with FSGS slows kidney failure

New findings demonstrate that reducing levels of protein in the urine can significantly slow the rate of kidney function decline and extend the time to kidney failure in patients with FSGS. 

These results, published online Aug. 10, 2020, in the American Journal of Kidney Disease, provide optimism in the possibility of a better outlook for patients who are able to lower their urinary protein but are not able to achieve complete remission, the researchers say.

Most clinical trials in FSGS use complete remission (normal levels) of proteinuria as a sign that the trial therapy is effective but the majority of patients only reach partial reduction in proteinuria.  Until now, it has been  uncertain if there was a real benefit from partial reduction to overall kidney health.

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Blood pressures in a portion of KRN patients are not well-controlled and the medications to help improve blood pressure are not started as early as advised

Hypertension is common in both pediatric and adult patients with proteinuric kidney disease.  In a new study looking at blood pressure control in the KRN registry, found that time to control blood pressure is over a year and unfortunately, 22% of patients never achieve control.  Improved blood pressure control is critical in these patients to prevent progressive kidney disease.  Read more...

As a patient, what can you do? Talk with your care team and advocate for yourself/your child.

  • What is my blood pressure?

  • Is it normal? If no, what should it be?

  • Request regular visits with your doctor until well-controlled.

PIONEER Initiative works to expand the inclusion of children in kidney trials

There are a record number of clinical trials underway in kidney disease to help identify new treatment options for patients. However not including children in these trials is common due to a lack of clarity around the supporting evidence trial developers need. A collaborative group of nephrologists and patient advocates has come together with representatives from the U.S. Food and Drug Administration and the European Medicines Agency to more clearly outline a path to successfully include children in kidney disease trials. Check back for updates!

Kidney Research Network   2020

 

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