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Abstract Details

A New Era in the Management of Rett Syndrome: Are Neurologists Ready for a Changing Management Landscape?
Education, Research, and Methodology
P14 - Poster Session 14 (11:45 AM-12:45 PM)

The development of disease-modifying therapies for RTT has made it imperative for HCPs to diagnose affected children early, so they can benefit from multidisciplinary care and breakthrough treatment.

To assess the influence of two years of continuing medical education (CME) on clinicians’ (HCPs) ability to recognize key signs of Rett syndrome (RTT), confirm its diagnosis, and evaluate the place of emerging treatments in the standard of care.

One 60-minute CME activity was launched live-online on 4/1/21 and expired on 4/1/2022 (year 1). The second activity launched on 8/18/22 and will remain on-demand until 8/18/23 (year 2). Test questions were administered pre, immediately post, and 2 months post activity. Responses from polling and surveys were analyzed for engagement, lessons learned, and continuing gaps. Chi-square compared paired responses (pre/post and pre/2 mos, P<0.05).

As of 9/4/22, 587 HCPs have participated in the activities, with 108 seeing 6 patients with RTT each month. Pre-activity, 50% of HCPs reported not being confident in diagnosing and managing RTT. Participation significantly enhanced awareness of RTT diagnosis (+30%) and multidisciplinary management (+34%, both P<0.05) and knowledge of emerging agents (+31%, P<0.05). Baseline knowledge and competence related to RTT were similar during year 1 and 2. More than 90% of HCPs reported that the content positively impacted their practice and gave examples (e.g., diagnosing a new patient and discussing treatment options).

Data support the positive impact of live-online CME to prepare HCPs to care for patients with RTT. However, baseline knowledge and competence were similar in year 1 and 2, indicating that there is a need for additional education to induce lasting changes in the care of RTT. 

Carole Drexel (PlatformQ LLC)
Carole Drexel has nothing to disclose.
Colleen Compton, Other Dr. Compton has nothing to disclose.
David N. Lieberman, MD, PhD (Boston Children'S Hospital) Dr. Lieberman has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Acadia Pharmaceuticals. Dr. Lieberman has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Taysha Gene Therapies. Dr. Lieberman has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Neurogene.
Paige Nues, Other (International Rett Syndrome Foundation) Mrs. Nues has received personal compensation for serving as an employee of International Rett Syndrome Foundation.