Poster · Rare Neurological Disorders
Expert Consensus on Real-world Use of Trofinetide for Rett Syndrome: a Delphi Study
1 vote
Davut Pehlivan1, Arthur Beisang2, Erin Prange3, Paula Schleifer4, Bernhard Suter1
- 1 Baylor College of Medicine, Houston, TX, USA
- 2 Gillette Children's Specialty Healthcare, Saint Paul, MN, USA
- 3 Children's Hospital of Philadelphia, Philadelphia, PA, USA
- 4 Nicklaus Children's Hospital Brain Institute, Miami, FL, USA
Conclusion: Recommendations highlight a flexible, patient-centered approach to trofinetide use to optimize efficacy while addressing tolerability challenges and supporting adherence. The findings suggest the integration of trofinetide in the comprehensive RTT management landscape. Further studies are warranted to refine these recommendations as real-world experience evolves.