We would like to advise you that Pulse Infoframe, the Company who has built this registry, and the NKF Patient Network, will no longer be collaborating, effective March 19th, 2023.

As per the consent form you provided and our role as the platform responsible for data collection, privacy and security, we want to let you know that your data will remain on the Pulse platform, we will continue to store the data and ensure, as per applicable regulations, that your data remain secure. If you also are part of a health system that is part of the NKF Patient Network, then in accordance with the consent form, they will have access to all of your data.

Please note, if you previously enrolled in the NKF Patient Network-Alport Syndrome Patient Registry please click here.

We appreciate your participation and we remain committed to supporting the kidney disease community.