The treatment of Rett Syndrome (RTT), a rare, genetic neurological disorder affecting young children that leads to severe impairments, is continuing to evolve. The first therapy was approved in March 2023, and with several investigational assets on the horizon, there is a critical need to educate both community-based clinicians and Centers of Excellence on this change to the standard of care.
To address these educational needs, Medlive (formerly PlatformQ Health) collaborated with our longstanding advocacy group partners NORD (National Organization for Rare Disorders) and IRSF (International Rett Syndrome Foundation) to create a three-phase CME initiative targeted at the multidisciplinary, community-based RTT care team.
- Phase 1: Exploring the Evolving Role of the Neurologist within the New Care Paradigm in Rett Syndrome (launched Feb. 27, 2024)
- Phase 2: Teaming Up to Treat Rhett Syndrome: The Importance of Fostering a Multidisciplinary Approach to Patient Care (launched April 25, 2024)
- Phase 3: Sharing Real-World Experiences with new Rett Syndrome Therapies (launched July 24, 2024)
This initiative was nationally broadcast to 2,300 learners, with 74% of them practicing within the neurology specialty. Geotargeted marketing efforts facilitated participation from health care professionals (HCPs) in four IRSF-identified “care deserts” (where RTT care is not easily accessible for patients) across the United States.
To date, practice data before and after the education and intent-to-change data support the effectiveness of the educational initiative in addressing attitudinal and knowledge gaps related to RTT care among community-based neurologists in identified care deserts.
- After participating in Phase 1, 79% of surveyed learners intend to implement a change in their practice with over half citing ‘choice of treatment/management approach’ as their intended practice change
- After participating in Phase 2, 81% of surveyed learners intend to implement a change in their practice, with 43% citing ‘use newly available therapies’ as their intended practice change
- Data collection for Phase 3 is ongoing, but early insights show that 33% of learners cite being ‘unsure how to use newly approved therapies in clinical practice’ as the top challenge when treating RTT
By partnering with leading advocacy organizations to provide ongoing education on diagnosis and treatment of RTT, we can ensure clinicians are equipped with the tools they need to deliver optimal care to RTT patients, no matter where they’re located.
About Medlive (formerly PlatformQ Health)
Medlive is the leader in learner engagement and educational design for clinicians, patients, and caregivers seeking dynamic, up-to-date, accurate medical education. Medlive provides trusted digital health education from leading specialists and advocacy/partner organizations to empower audiences to make informed medical decisions that lead to better health outcomes.
Visit Medlive.com for more information.