This EWG was formed in 2023. In addition to testing and using the GloBE-Reg platform and stimulating the development of studies, the EWG will develop a recommendation for a minimum dataset that should be collected in all children with Noonan Syndrome who may receive rhGH therapy. The EWG also has representation from 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 Noonan Syndrome
- Noonan Syndrome module launched April 2024
- Presentation on NS MDS at ENDO 2024, Boston, June 2024
Members:
| Alexander Jorge | Chair, Sao Paulo, Brazil |
| Faisal Ahmed | GloBE-Reg Project Management |
| Gerhard Binder | Tübingen, Germany |
| Ching Chen | GloBE-Reg Project Management |
| Cathy Choong | Perth, Australia |
| Thomas Edouard | Toulouse, France |
| Antony Fu | Hong Kong, China |
| Reiko Horikawa | Tokyo, Japan |
| Alyse Hubbard | US Noonan Syndrome Association |
| Jan Lebl | Prague, Czech Republic |
| Laura Mazzanti/Frederica Tamburrino | Bologna, Italy |
| Alicia Romano | New York, USA |
| Guftar Shaikh | Glasgow, UK |
| Sonia Tamponi | NS Association, Italy |
| Pierre Yger | Association Noonan, France |
Declarations of Interests Table
Members of the Noonan Syndrome can access a private area here
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