Since 2014, NephCure Kidney International (informally called NephCure) enthusiastically collected your survey responses in a systematic and safe way to help researchers and doctors better understand Nephrotic Syndrome, FSGS, and related diseases. Over the past few years, we have released annual reports about the trends of diagnosis patterns, treatment options, and your opinions about research and clinical trials. In addition, through our participation in larger networks of data (thanks to our involvement in PCORnet), we learned about electronic health record access for Nephrotic Syndrome patients, sleep habits, and potential mobile app use.
We are pleased to release the final Annual Report, which includes data collected over a 13-month period between 2017 and 2018. While the NephCure Kidney Network Patient Registry is no longer open to registrants, the data will be available for researchers to study for the next 3 years (should they be approved by a patient-centric committee for data access).
If you have any questions about the NKN Patient Registry, please email firstname.lastname@example.org.