This Expert Working Group (EWG) was formed in 2026. 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 adults 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 adults with Prader Willi Syndrome
- Creation of an Adult Prader Willi Syndrome module in the registry
Members:
| Malika Alimussina | Glasgow, UK |
| Assumpta Caixàs Pedragós | Barcelona, Spain |
| Laura de Graaff | Rotterdam, Netherlands |
| James Gibney | Dublin, Ireland |
| Tony Goldstone | London, UK |
| Charlotte Höybye | Stockholm, Sweden |
| Lim Quan Hziung | Kuala Lumpur, Malaysia |
| Pietro Maffei | Padova, Italy |
| Tania Markovic | Sydney, Australia |
| Emilie Montastier | Toulouse, France |
| Isabella Nui | California, USA |
| Savi Shishkov | Varna, Bulgaria |
| Kirstine Stochholm | Aarhus, Demark |
| Theresa Strong | FWPR, USA |
| 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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