You’re Changing the Story
Participating in the NephCure Kidney Network patient registry is a chance for YOU to help researchers find better treatments and the cure for the rare diseases that cause primary Nephrotic Syndrome. Researchers need to know more about who has these diseases and how their health and lives are affected. Each person or parent/guardian of a child with these diseases that registers can have a positive impact on thousands as we march together toward a cure.
With just 30 minutes of your time you can become part of the movement that changes how research of chronic kidney diseases like FSGS and Nephrotic Syndrome is done.
How? Step one is to join a patient-powered registry. NephCure has partnered with Arbor research to create a safe, secure, informed network for patients and their loved ones – just like you. We call this registry the NephCure Kidney Network, or NKN.
How does it work? You spend about 30 minutes answering questions online. You will need to have some things on hand, like lab results. Remember, researchers and doctors need data to develop better treatment options, so the more detailed information you can provide the better.
What happens next? When you complete the survey, your data donation is reviewed for completion and then de-identified, which means your name and other identifying information is removed, and is made available to researchers and clinicians studying and treating FSGS and the conditions that cause Nephrotic Syndrome.
Your data donation provides valuable information that can change the face of research. Your donation may make it easier for researchers to determine if you could be eligible to participate in clinical trials, which can be anything from answering a survey to visiting a medical center for more involved studies. Your participation is completely voluntary.
It’s been more than a decade since there has been a breakthrough treatment for kidney disease, and there are no FDA-approved treatments for FSGS and NS available today. As cases of chronic kidney disease continue to rise, we need to change that. Your data donation can help. Join the NKN today and join a movement to make a difference.
The NKN Annual Reports
We are pleased to provide you with the Annual Data Report of the NephCure Kidney Network Patient Registry. The Annual Data Reports summarize the data provided by registry participants collected from March 2014 to March 2016.