Dear RegistryNXT! Participant,
The Rare Disease Registries will be introducing a new feature in RegistryNXT! to collect electronic patient reported outcomes (ePRO) directly from patients, starting with the SF-36v2 for Fabry Registry, Gaucher Registry, and Pompe Registry. This will provide access via our web-based mobile-friendly portal and improve patient engagement and participation in the Rare Disease Registries.
To implement this new feature, RegistryNXT! and Rave Data Entry for all four Registries (Fabry, Gaucher, Pompe and MPS I) will be taken offline.
The Registries are expected to be unavailable for 4 consecutive days starting:
|- UTC:||Thursday 4 August 2022, 22:00hrs (10:00 pm)|
|- US EST:||Thursday 4 August 2022, 18:00hrs (6:00 pm)|
|- CEST (Paris):||Friday 5 August 2022, 00:00hrs (12:00 am)|
|- SGT (Singapore):||Friday 5 August 2022, 6:00hrs (6:00 am)|
The system is expected to come back online on Tuesday 9 August 2022.
We apologize for any inconvenience this may cause you.
Thank you for your patience and commitment to the Rare Disease Registries, The RegistryNXT! Team