A new commentary published in Diabetes, Obesity and Metabolism shares practical recommendations for gathering real world evidence on the use of GLP-1 medications in people with Prader-Willi syndrome. The article summarises a workshop held as part of the United in Hope: International PWS Conference 2025, where the Foundation for Prader-Willi Research (FPWR) and IPWSO brought clinicians together to compare experiences and discuss what information should be tracked in everyday care.
Although medicines such as semaglutide and tirzepatide are being prescribed more often in PWS, strong data on their benefits and risks for this group remain limited. Workshop participants reviewed the existing evidence and agreed on a simple and realistic set of measures for clinicians and families to record, including changes in hunger, behaviour, gastrointestinal symptoms and routine laboratory results.
The group also supported creating a shared clinical database that could help provide much needed clarity. Since large clinical trials in PWS are unlikely, coordinated real world data may play an important role in understanding how well GLP-1 therapies work for this community.
Readers can access the full document at this link or contact office@ipwso.org for further information.