GloBE-Reg is an international registry project that can support the collection of real world data for post-regulatory approval studies for multiple novel therapies for conditions affecting endocrine or bone health. The stakeholders of this project include patient, professional and scientific organisations and industry.

The aim of the newsletter is to provide an update on recent activities. The newsletter is issued twice a year – Spring and Autumn.

On the project website http://globe-reg.net, you will find detailed information on the Steering Committee, the Project Management Group, the Data Access Committee, the Scientific Studies Committees and the Scientific Study Groups. Further information about the registry platform as well as information on how to recruit participants are also posted here. Please do have a look and let us know if the website should have any other information.

The registry received ethics/IRB approval in the UK and went live in October 2022. The platform is easily adaptable to any therapy and customisable for a wide range of languages. The first task of GloBE-Reg was to develop a specific module for rhGH therapy in children and this has also now been in use for about 3 months. Although safety information on rhGH therapy has now been collected for several years, there are still existing gaps in our knowledge. With the introduction of new indications and novel forms of rhGH, such as long-acting rhGH, the need for a global registry has never been greater. This registry module will be able to collect information on all types of rhGH therapies for any indication.

The GloBE-Reg GH Scientific Study Group (SSG) has been busy with several tasks including advising on the data fields in the rhGH module, testing and using the GloBE-Reg platform and thinking of studies that can be performed in the short-term as well as over the longer term.  Importantly, the GH SSG has developed a recommendation on the minimum dataset that should be collected in all children receiving rhGH therapy for GH Deficiency. This will be presented as poster at the 11^th International Meeting of Paediatric Endocrinology in Buenos Aires.  The GH SSG has also embarked on a systematic review of the outcomes that are collected in children receiving rhGH therapy for GHD.

To develop and sustain a network of centres that are active users of the GloBE-Reg registry platform, GloBE-Reg is pleased to announce the launch of the GloBE-Reg Collaborative Centre (GCC) grants that will include:

• Set-up Grant for a new centre that wants to join the Collaborative and become an active user
• Support Grant for an active centre within the Collaborative
• Travel Grant for an active centre within the Collaborative

For further information please visit the website

Since the launch of the live registry in October 2022,  37 users from 29 centres in 20 countries around the GloBE have registered to use the registry and have started the process of obtaining local approvals! Cases with a wide range of conditions including Growth Hormone Deficiency, Turner Syndrome, Noonan Syndrome and Prader Willi Syndrome.  

With the introduction of patients to the registry the Project Team have been working with users of the registry to provide Patient Information Sheets in multiple languages.  If you would like to help with translation into your local language, we'd love to hear from you.

The GloBE-Reg Project Management Group