NKF, Alport Syndrome Foundation expand registry for patients with rare kidney disease
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The National Kidney Foundation and the Alport Syndrome Foundation will collaborate on an effort to expand research opportunities for patients with the rare kidney disease.
“We believe that this partnership, with the combined strengths of NKF’s programmatic expertise and the Alport Syndrome Foundation’s large, engaged patient community, will provide a powerful research tool, support clinical trials and help find new treatments,” Kerry Willis, PhD, chief scientific officer of the NKF, said in a press release.
Alport syndrome results from a defective collagen gene that is passed down from parents to children. The disease causes kidney function to decline over time.
NKF and Alport Syndrome Foundation (ASF) supporters will collaborate on the NKF Patient Network, a kidney disease registry that has both patient-entered data combined with electronic health records. Patients with all stages of kidney disease can register and add their health information.
“I am so delighted about this partnership,” Lesley Inker, MD, director of the Kidney and Blood Pressure Center and the Kidney Function and Evaluation Center at Tufts Medical Center. “As a member of the medical advisory committee for ASF and as chair of the steering committee for the [NKF Patient] Network, I have great confidence that the information we learn from the patients with Alport syndrome will make a real difference in helping us to find, and ultimately implement, life-changing therapies.”
For more information about the new NKF Patient Network – Alport Syndrome sub-registry, go to nkfpatientnetwork.org.
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