Experts identified by the GloBE-Reg Steering Committee were invited to form a GH Scientific Study Group (SSG) in early 2022. The SSG has several tasks including advising on the data fields in the GH module, testing and using the GloBE-Reg platform and developing studies that can be performed in the short-term as well as over the longer term. Importantly, the GH SSG has embarked on the development of a recommendation for a core dataset that should be collected in all children receiving rhGH therapy. The SSG also has representation from patient associations as well as experts from the GH Research Society.
Objectives
The aim of this Study Group is to build collaborations in the field of growth hormone therapy (rhGH) between professional societies, patients and industry to improve our knowledge of long-term safety and effectiveness of rhGH.
The remit of the group includes:
- Advise GloBE-Reg on the development of the rhGH Study Module
- Act as a liaison between the professional societies, industry, patients and the GloBE-Reg project
- Actively contribute to the GloBE-Reg Registry
- Participate and lead on studies developed from the data generated by the GloBE-Reg project
- Act as international ambassadors for the GloBE-Reg project and disseminate its activities
GloBE-Reg GH Scientific Study Group Remit
Current Activities
- Survey of the routine clinical practice of monitoring rhGH therapy in children with GHD
- Advise on the development of the minimum dataset in the rhGH Study Module in the GloBE-Reg platform
- Promoting the use of GloBE-Reg for collect real world data on rhGH
Outputs to date
| 2022 |
| rhGH Study Module in GloBE-Reg |
| rhGH Minimum Dataset for GHD |
| Poster Presentation at ESPE |
| Invited lecture at APPES |
| Invited lecture at SLEP |
Members of the GH SSG:
| Name | Affiliation | |
|---|---|---|
| Faisal Ahmed | Project Lead, Office for Rare Conditions | Glasgow, UK |
| Evangelia Charmandari | Endo-ERN | Athens, Greece |
| Ching Chen | Senior Fellow, Office for Rare Conditions | Glasgow, UK |
| Jin-Ho Choi | APPES | Seoul, South Korea |
| Chunxiu Gong / Xinyu Dou | CSPE | Beijing, China |
| Rasha Tarif Hamza | ASPED | Cairo, Egypt |
| Jamie Harvey | Patient Representative | MAGIC Foundation |
| Andrew Hoffman | GRS | Stanford, USA |
| Reiko Horikawa | JSPE | Tokyo, Japan |
| Gudmundur Johannsson | Endo-ERN/GRS | Gothenburg, Sweden |
| Alexander Jorge | SLEP | Sao Paulo, Brazil |
| Bradley Miller* | PES | Minneapolis, USA |
| Lars Sävendahl* | ESPE | Stockholm, Sweden |
| TBC | ANZSPED | TBC |
| Xanthippi Tseretopoulou | Training Fellow, Office for Rare Conditions | Glasgow, UK |
| Diana Vitali* | Patient Representative | SOD Italia and Endo-ERN |
Supported by the Project Management Group
Compiled Declarations of Interest
Members of the GH SSG can access a private area here.
globe-reg.net 