The Growth Hormone Study Module For Paediatric Growth Hormone Deficiency - In The Global Registry For Novel Therapies In Rare Bone & Endocrine Conditions (GloBE-Reg)
The Growth Hormone Study Module For Paediatric Growth Hormone Deficiency – In The Global Registry For Novel Therapies In Rare Bone & Endocrine Conditions (GloBE-Reg)
NAME | AFFILIATION | PLACE |
---|---|---|
Faisal Ahmed | Project Lead, Office for Rare Conditions | Glasgow, UK |
Evangelia Charmandari | Endo-ERN | Athens, Greece |
Jin-Ho Choi | APPES | Seoul, South Korea |
Chunxiu Gong / Xinyu Dou | CSPE | Beijing, China |
Jamie Harvey | MAGIC Foundation | USA |
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 |
Rasha Hamza Tarif | ASPED | Cairo, Egypt |
Diana Vitali | Patient Representative | SOD Italia and Endo-ERN |
GH Scientific Study Group
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.
©2024 SLEP / Sociedad Latinoamericana de Endocrinología Pediatrica