Objective:

To address diagnostic and treatment challenges to accessing equitable care for Rett syndrome (RTT) in “care deserts” (where RTT care is sparse) through continuing medical education.

Background:

With the approval of the first treatment for RTT, community-based neurologists must be prepared to address the unique needs of patients with RTT.

Design/Methods:

An educational 3-phase initiative was broadcast nationally with a geotargeted marketing strategy to 4 “care deserts” across the United States. Multidisciplinary faculty panels paired community-based clinicians with those from COEs, leveraging an ECHO model. Phase 1 addressed diagnostic challenges. Phase 2 addressed challenges local to each “care desert”. Phase 3 discussed multidisciplinary best practices in RTT care in community settings.

Results:

As of October 2, 2024, 947 clinicians have participated in the initiative (82% neurologists, with 66% in care deserts). Participating in the serialized activities resulted in increased confidence among clinicians related to counseling caregivers about new therapies (52% pre vs 88% post) and improved awareness of how to integrate novel therapies (57% pre vs 88% post) and address RTT multidisciplinary care needs (47% pre vs 88% post). The most commonly reported practice changes related to treatment selection (49%) and team-based collaboration (38%). Barriers to implementing change varied regionally and included lack of knowledge regarding evidence-based strategies (40%) and lack of resources to implement change (25%).

Conclusions:

Data support the effectiveness of the educational initiative in addressing knowledge and practice gaps related to RTT care among community-based neurologists. Barriers to change and deficits in knowledge highlight a need for additional educational and systemic interventions.