We would like to advise you that Pulse Infoframe Inc., the Company who has built this registry, and the Orphan Disease Center (ODC) at the University of Pennsylvania, will no longer be collaborating, effective October 31st 2024.
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 be transferred to the ODC by November 30th2024. Should you wish to modify your consent in any way, please contact the ODC at( ODCRegistry@pennmedicine.upenn.edu ). In the meantime, we will continue to store your data and ensure, as per applicable regulations, that your data remain secure
We appreciate your participation in this registry, and we remain committed to supporting the CDKL5 community. Thank-you the Pulse infoframe team.