Patient Reported Outcomes in FSGS and MCD
There are commonalities to the FSGS and MCD patient quality of life experience. This study enabled the generation of a disease specific FSGS-MCD patient reported outcomes (PRO) measure for use in children and adults. The tool is intended to facilitate better patient care and support clinical research in these populations.
This 2-day meeting of investigators will focus on the critical problem of Recurrent Focal Segmental Glomerulosclerosis in kidney transplant. The primary objectives of this meeting are to identify and prioritize opportunities to advance our understanding of disease mechanisms, expand the foundation for drug development and expand collaborative research focused FSGS recurrence.
FSGS Recurrence Collaborative Meeting
December 13 -14, 2021
In 2019, as part of our Patient Focused Drug Development (PFDD) efforts, the U.S. Food and Drug Administration (FDA) developed a pilot grant program to support the development of publicly available core set(s) of Clinical Outcome Assessments (COAs) and their related endpoints for specific disease indications.
On April 29, 2021 the FDA made two awards under this funding opportunity announcement (RFA-FD-21-004). These awards will provide avenues to advance the use of patient input as an important part of drug development that can foster innovation and the availability of safe and effective drugs.
FDA has developed a Pilot Grant Program to support the development of publicly available core set(s) of COAs and their related endpoints
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.
KRN quality improvement team brings attention to mental health conditions in patients with kidney disease
Why? Patients of all ages with kidney disease are referred to mental health providers frequently than their healthy counter-parts. Research from the KRN registry shows that 1in 8 patients were diagnosed with a psychiatric disorder after the onset of kidney disease, and the rate was highest among adolescents. What can you do? Ask your primary nephrologist about screening and support services for good mental health.
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. Read more...