This Expert Working Group (EWG) was formed in 2024. In addition to testing and using the GloBE-Reg platform and stimulating the development of studies, the EWG will also develop a recommendation for a minimum dataset that should be collected for children with Prader Willi Syndrome who may receive rhGH therapy. The EWG also has representation from industry and patient associations.
All EWGs have a Remit and a maximum duration of 2 years.
Current Activities
- Development of the minimum dataset for monitoring safety and effectiveness of rhGH in Prader Willi Syndrome
- Creation of Prader Willi Syndrome module in the registry
Members:
| Antony Fu | Hong Kong, China |
| Evelien Gevers | London, UK |
| Charlotte Höybye | Stockholm, Sweden |
| Marguerite Hughes | IPWSO, Ireland |
| Violeta Iotova | Varna, Bulgaria |
| Yazid Jalaludin | Kuala Lumpur, Malaysia |
| Gerthe Kerkhof | Rotterdam, Netherlands |
| Wei Lu | Shanghai, China |
| Jennifer Miller | Gainesville, USA |
| Ohn Nyunt | Sydney, Australia |
| Edna Roche | Dublin, Ireland |
| Guftar Shaikh | Glasgow, UK |
| Theresa Strong | FWPR, USA |
| Maithé Tauber | Toulouse, France |
| Latife Tyszler | Rio de Janeiro, Brazil |
| Ching Chen | GloBE-Reg Project Management |
| Faisal Ahmed | GloBE-Reg Project Management |
Declarations of Interests Table
Members of the PWS EWG can access a private area here
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