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.

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 Draft Remit

Current Activities

  1. Survey of the routine clinical practice of monitoring rhGH therapy in children with GHD
  2. Advise on the development of the minimum dataset in the rhGH Study Module in the GloBE-Reg platform
  3. 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:

NameAffiliation
Faisal AhmedProject Lead, Office for Rare ConditionsGlasgow, UK
Evangelia CharmandariEndo-ERNAthens, Greece
Ching ChenSenior Fellow, Office for Rare ConditionsGlasgow, UK
Jin-Ho ChoiAPPESSeoul, South Korea
Chunxiu Gong / Xinyu DouCSPEBeijing, China
Jamie HarveyMAGIC FoundationUSA
Andrew HoffmanGRSStanford, USA
Reiko HorikawaJSPETokyo, Japan
Gudmundur JohannssonEndo-ERN/GRSGothenburg, Sweden
Alexander JorgeSLEPSao Paulo, Brazil
Bradley Miller*PESMinneapolis, USA
Lars Sävendahl*ESPEStockholm, Sweden
Rasha Hamza TarifASPEDCairo, Egypt
TBCANZSPEDTBC
Xanthippi TseretopoulouTraining Fellow, Office for Rare ConditionsGlasgow, UK
Diana Vitali*Patient RepresentativeSOD Italia and Endo-ERN
* Current representatives of the GH SSG on the GH Scientific Studies Committee

Supported by the Project Management Group

Members of the GH SSG can access a private area here.