GloBE-Reg is a new international registry project that has been launched by the Office for Rare Conditions at the University of Glasgow. The project believes that post regulatory approval studies may be more effectively performed through registry-based studies that collect relevant real world data through a joint collaborative approach between scientific centres, industry partners and medical societies. GloBE-Reg will also use this approach to serve the needs of the endocrine community for assessing longer term clinical outcomes, which are particularly important to continuously expand our scientific knowledge and improve care in children.
The steering committee of GloBE-Reg consists of representatives from a wide range of paediatric endocrine organisations across the world as well as members of industry. The first task of GloBE-Reg is to develop a specific module for novel long-acting GH therapy in growth hormone deficiency and it is anticipated that this will be live by the end of 2022. The platform that is being developed will be easily adaptable for other classes of therapies and the data that are collected shall be available to all approved investigators. You can find out more at the project’s website: www.GloBE-Reg.net and can stay up to date by following @globe_reg on Twitter.
Note: GloBE Reg will serve the purpose of supporting post regulatory studies whereas EURRECa and EuRR-Bone are focused on the natural history of rare diseases and their management. All registries will share the common data elements to ensure future collaboration and data exchange.