Sharing Real-World Experiences with New Rett Syndrome Therapies

Target Audience
The educational design of this activity addresses the needs of neurologists, pediatric neurologists, and specialty NP/PAs involved in the treatment of patients with Rett syndrome.

Program Overview
Integrating newer agents for the treatment of Rett syndrome into clinical practice can be challenging, particularly in community settings. In this activity, an expert panel will convene featuring a neurologist from an International Rett Syndrome Foundation (IRSF)-designated center of excellence and a community-based multidisciplinary team, featuring a neurologist, a gastroenterologist, a physical therapist, and a speech therapist. Panelists will discuss their real-world experiences integrating novel treatments for Rett syndrome into clinical care. Experts will also share proven strategies to improve care coordination and address barriers for patients with Rett syndrome, including through the use of telehealth and ECHO programs. This activity is the third and final installment in a larger three-part educational initiative aimed at bettering outcomes for patients with Rett syndrome. As such, the panel will also answer questions received in real-time as well as those that have been received during previous parts of the curriculum.

Learning Objectives
After completing this activity, the participant should be better able to:

Discuss real-world experiences with newly available therapies for the treatment of patients with Rett syndrome
Explain the practical considerations involved in collaboration between community neurologists, the multidisciplinary team, and centers of excellence, such as development of ECHO programs and use of telehealth
Use strategies to ensure effective management of Rett syndrome in the community setting, including monitoring therapy response, managing adverse events, ensuring continuity of care, and transitioning from pediatric to adult care