好色先生

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Abstract Details

Closing the Care Divide in Rett Syndrome: Connecting Centers of Excellence With Community Clinicians Through a Multidisciplinary, Multiphase, Geotargeted 好色先生al Initiative
好色先生, Research, and Methodology
P12 - Poster Session 12 (11:45 AM-12:45 PM)
5-011
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.
With the approval of the first treatment for RTT, community-based neurologists must be prepared to address the unique needs of patients with RTT.
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.
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%).
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.
Authors/Disclosures
Carole Drexel (PlatformQ LLC)
PRESENTER 		Carole Drexel has nothing to disclose.
Vandana Gupta, MSc Ms. Gupta 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.
Theresa Bartolotta, PhD Dr. Bartolotta has received personal compensation in the range of $0-$499 for serving as a Consumer Reviewer with General Dynamics. Dr. Bartolotta has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant with International Rett Syndrome Foundation.
Henry Hasson, MD Dr. Hasson has nothing to disclose.
Dallas Armstrong, MD (CHOP) The institution of Dr. Armstrong has received research support from Taysha.
Karen C. Keough, MD (Child Neurology Consultants of Austin) Dr. Keough has received personal compensation in the range of $5,000-$9,999 for serving as a Speaker with UCB. Dr. Keough has received personal compensation in the range of $50,000-$99,999 for serving as a Speaker with Jazz Pharmaceuticals. Dr. Keough has received personal compensation in the range of $50,000-$99,999 for serving as a Speaker with SKLSI . Dr. Keough has received personal compensation in the range of $10,000-$49,999 for serving as a Speaker with LivaNova.
Amitha Ananth, MD (University of Alabama at Birmingham/Pediatric Neurology) Dr. Ananth has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Reata Therapeutics. The institution of Dr. Ananth has received research support from Acadia Pharmaceuticals.