Abstract Introduction Narcolepsy Type 1 (NT1) is often under-recognized, partly due to symptom overlap with other sleep and psychiatric disorders. With emerging therapies targeting orexin deficiency, timely and accurate diagnosis is critical. This program aimed to characterize current challenges faced by clinicians in NT1 recognition, diagnosis, and management, and to identify potential strategies to support practice improvement. Methods This ongoing, multi-phase initiative involved five in-clinic educational sessions across U.S. sleep centers and a national symposium held at SLEEP 2025. Clinicians completed pre- (n=99) and post-session (n=57) or pre- (n=175) and post-symposium (n=165) surveys assessing perceived challenges around NT1 diagnosis and care. A longitudinal follow-up survey will evaluate how site-specific strategies developed during the sessions were sustained in clinical practice. Results Across in-clinic sessions, clinicians identified key barriers to timely NT1 recognition and diagnosis, including overlapping symptoms with other sleep or psychiatric disorders (50%), lack of familiarity with diagnostic criteria (32%), and limited reporting of cataplexy (35%). System-level challenges included inconsistent knowledge of diagnostic criteria across multidisciplinary teams (27%), and difficulty coordinating referrals across health systems (40%). To address identified gaps, clinicians proposed strategies including integrating the Epworth Sleepiness Scale into assessment and referral workflows and enhancing clinician education on pathophysiology and symptom recognition. Teams committed to increase NT1 symptom screening during visits and regularly discuss emerging therapies and clinical data. Insights from the national symposium aligned with these findings, with the top challenge identified as differentiating NT1 from other disorders. Following the sessions, knowledge of pathophysiology including the role of orexin deficiency increased from 44% to 89%, confidence in differentiating NT1 from other disorders improved from 47% to 86%, and familiarity with emerging treatment mechanisms and clinical trial data rose from 42% to 82% (all Likert 3/4/5), suggesting that targeted educational programs can help address current challenges in NT1 care. Conclusion This initiative highlighted national barriers to NT1 recognition and diagnosis and identified actionable strategies, including enhanced symptom screening, team education, care coordination, and review of emerging therapies, to support timely, accurate, and multidisciplinary NT1 management. Support (if any) This program was supported by an educational grant from Takeda Pharmaceuticals U.S.A., Inc.
Corser et al. (Fri,) studied this question.