Category: Uncategorized

Visit us at the Office for Rare Conditions – Registries booth (#32) and join our Registries Drop-in Session on 9 September, 13:00–14:00 to find out more and ask any questions about GloBE-Reg. https://globe-reg.net/orc-registries-espe/

Our next on-line drop-in is on Friday 4th September (0900-1000 UK time). Join Teams meeting: https://teams.microsoft.com/meet/366305713999431?p=nOzaXIMCOvTL8RHjvI

Educational video guides are available to help centres and users to join, set-up and use the registry. https://globe-reg.net/video-guides/

The Spring 2026 GloBE-Reg Newsletter is now published! https://sway.cloud.microsoft/HmlW6Izkgi7JaSs2?ref=Link&loc=play

The GloBE-Reg Centre Grants application deadline is 30th September - for details on how to apply visit https://globe-reg.net/globe-reg-collaborative-centre-grants/

Our next on-line drop-in is on Friday 6th June (9-10am UK time). For details and the link to join visit https://www.gla.ac.uk/orcregistriesdrop-insessions/

GloBE-reg is pleased to announce the launch of a new Student Scholarship Award to support activities at a GloBE-Reg Collaborative Centre. For more information, visit  https://globe-reg.net/globe-reg-collaborative-centre-grants/

Case Report Forms have now been developed to capture information on rhGH therapy in Adulthood GHD. A big thank you to the Adulthood GHD Expert Working Group for developing the module and all the registry users for their feedback.  For further information on the Adulthood GHD EWG visit https://globe-reg.net/adulthood-ghd/

Condition-specific Case Report Forms will capture information on all Noonan Syndrome patients in the registry. A big thank you to the NS Expert Working Group for developing the module and the registry user volunteers for providing feedback.  For further information on the NS EWG visit https://globe-reg.net/noonan-syndrome/

GloBE-Reg is delighted to announce that Ashley Gilmer from @ICOSEPorg has joined the @globereg patient advisory group https://globe-reg.net/patient-advisory-group/