The RegistryNXT! system is down for maintenance.

Dear Registry Investigators and Site Staff,

The Rare Disease Registries will be implementing system updates for the RegistryNXT! portal and a CRF update for the Fabry Registry starting on Friday July 18th.

RegistryNXT! will undergo system updates of which the following will be visible in the RegistryNXT! portal:

• Changes to the Site Dashboard
  • Due to updated data privacy guidelines and standards, the Patient List will now display only Year of Birth instead of the complete Date of Birth.
  • The layout of the Patient Profile is updated, and the following information is added to the Patient Profile:
  • Lost to Follow-up: Setting that allows you to indicate if the patient is in contact with the site or not
  • Date of Consent: Date patient consented
  • Last Data Entered By Site
  • Last Data Entered By Patient
• Changes to the Manage Questionnaires Dashboard
  • Columns showing the Completion Date and Response Type (entered by site or patient) of a questionnaire are added

The following CRF change is being implemented for Fabry Registry to reflect the change in standard of care for Fabry disease:

• Secondary Fabry Therapy CRF: the Medication Category drop-down list is being updated to add two new categories: SGLT-2 inhibitor and GLP-1 agonist

To implement these changes, RegistryNXT! (including Rave Data Entry) for all Registries (Fabry, Gaucher and Pompe) will be taken offline for approximately 3 days, starting at:

- UTC:	Friday 18 July 4.00hrs / 4.00am
- US EDT:	Friday 18 July 0.00hrs / 12.00am
- CEST (Paris):	Friday 18 July 6.00hrs / 6.00am
- SGT (Singapore):	Friday 18 July 12.00hrs / 12.00pm

We expect that the RegistryNXT! system will be back online Monday, July 21st.

In case of any further questions please do not hesitate to reach out to your CRA.

Kindest regards,
On behalf of the Rare Disease Registries