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This study analyzed data from 1272 adults with self-reported central disorders of hypersomnolence (CDH) who completed a Project Sleep online survey between March and April 2021 that included questions about year of diagnosis as well as time between symptom onset and diagnosis.

The number of CDH diagnoses increased steadily over time with a dramatic jump in 2009 / 2010. For each calendar year, the ratio of individuals with short delays (<3 years to diagnosis, lowest quartile) and long delays (>15 years, highest quartile) was calculated. This short/long delay ratio did not correlate to calendar year (r=-0.036). Overall there was no clear evidence of a reduction in time to diagnosis in the last decades. Changes may be obscured by the population’s age and rising rates of CDH diagnosis (new and old cases) over the last two decades. The 2009/2010 surge in NT1 and NT2 diagnoses could be linked to the H1N1 flu pandemic and Pandemrix® vaccine, alongside increased awareness and internet access. 

Leary EB, Flygare J, Oglesby L, Maski K, Barateau L. Evolving Diagnostic Patterns in Central Disorders of Hypersomnolence: Has Time to Diagnosis Gotten Shorter Over the Last Decades? Sleep 47(suppl_1), May 2024 (Late Breaking Abstracts).

Van Dongen H, Leary EB, Eglit G, Drake C, Bogan R, Jaeger J. Solriamfetol on Cognition in Obstructive Sleep Apnea with Excessive Daytime Sleepiness and Impaired Cognition. Sleep 47(suppl_1) A432-433, May 2024, DOI: 10.1093/sleep/zsae067.01007.

Macfadden W, Leary EB, Fuller DS, Kirby MT, Roy A. Effectiveness and optimization of low-sodium oxybate in participants with narcolepsy switching from a high-sodium oxybate: data from the SEGUE study. J Clin Sleep Med. 2024 Apr 23. DOI: 10.5664/jcsm.11182. PMID: 38652499.

Suh S, Lok R, Weed L, Cho A, Mignot E, Leary EB; STAGES cohort investigator group; Zeitzer JM. Fatigued but not sleepy? An empirical investigation of the differentiation between fatigue and sleepiness in sleep disorder patients in a cross-sectional study. J Psychosom Res. 2024 Feb 9;178:111606. DOI: 10.1016/j.jpsychores.2024.111606. PMID: 38359639.

Husain AM, Zee PC, Leary EB, Fuller DS, Macfadden W, Candler S, Whalen M, Bae CJ. Dosing and transition characteristics in people with narcolepsy transitioning from sodium oxybate to low-sodium oxybate: Data from the real-world TENOR study. Sleep Med. 2024 Jan;113:328-337. DOI: 10.1016/j.sleep.2023.11.022. Epub 2023 Nov 25. PMID: 38103464.

Van Dongen H, Leary EB, Drake C, Bogan R, Jaeger J, Rosenberg R, Streicher C, Kwak H, Bates J, Tabuteau H. Effects of Solriamfetol on Cognition in Participants with Cognitive Impairment Associated with Excessive Daytime Sleepiness in Obstructive Sleep Apnea: SHARP Study Results. Sleep Medicine Sleep Medicine Suppl 1, Abstracts from the 17th World Sleep Congress, Oct 2023.

Gozal D, Van Dongen H, Leary EB, Gursahani H, Parks G, Floam S, Tabuteau H. Solriamfetol Improves Cognitive Performance in Preclinical Models of Sleep Apnea and in a Randomized Placebo-Controlled Study of Sleep Apnea Participants (SHARP). Sleep Medicine Suppl 1, Abstracts from the 17th World Sleep Congress, Oct 2023.

Nichols D, Macfadden W, Leary EB, Gwadry-Sridhar F, Owens J. CATNAP: Burden of Pediatric Narcolepsy on Patients and Caregivers. Sleep Medicine Suppl 1, Abstracts from the 17th World Sleep Congress, Oct 2023.

Suh S, Lok R, Weed L, Cho A, Mignot E, Leary E, Zeitzer J. Fatigued but not sleepy? An empirical investigation of the differentiation between fatigue and sleepiness in sleep disorder patients. Sleep Medicine Suppl 1, Abstracts from the 17th World Sleep Congress, Oct 2023.

Cederberg KLJ, Peris Sempere V, Lin L, Zhang J, Leary EB, Moore H, Morse AM, Blackman A, Schweitzer PK, Kotagal S, Bogan R, Kushida CA, STAGES Cohort Investigator Group, Mignot E. Proteomic insights into the pathophysiology of periodic limb movements and restless legs syndrome. Sleep Health. 2023 Aug 8:S2352-7218(23)00130-4. DOI: 10.1016/j.sleh.2023.06.008. PMID: 37563071.

Bae CJ, Zee PC, Leary EB, Fuller DS, Macfadden W, Candler S, Steininger TL, Husain AM. Effectiveness and tolerability in people with narcolepsy transitioning from sodium oxybate to low-sodium oxybate: Data from the real-world TENOR study. Sleep Med. 2023 Sep;109:65-74. DOI: 10.1016/j.sleep.2023.05.023. Epub 2023 Jun 19. PMID: 37421868.

Grandner MA, Min JS, Saad R, Leary EB, Eldemir L, Hyman D. Health-related impact of illness associated with excessive daytime sleepiness in patients with obstructive sleep apnea. Postgrad Med. 2023 May 2:1-10. DOI: 10.1080/00325481.2023.2203623. Epub ahead of print. PMID: 37129416.

Leary EB, Pfister C, Fuller DS, Macfadden W. Effectiveness and Optimization of Lower-Sodium Oxybate in Participants With Narcolepsy Switching From Sodium Oxybate (SEGUE). Sleep 46(suppl_1) A2259-A260, May 2023, DOI: 10.1093/sleep/zsad077.0591.

Van Dongen H, Leary EB, Drake C, Bogan R, Jaeger J, Rosenberg R, Streicher C, Kwak H, Bates J, Tabuteau H. Solriamfetol Demonstrates Durable Cognitive Improvement in Adults with Obstructive Sleep Apnea and Excessive Daytime Sleepiness. Sleep 46(suppl_1) A246, May 2023, DOI: 10.1093/sleep/zsad077.0559.

Husain A, Zee P, Leary EB, Macfadden W, Fuller DS, Candler S, Bae C. Patient-Reported Sleep Quality in People With Narcolepsy Transitioning From Sodium Oxybate to Low-Sodium Oxybate. Sleep 46(suppl_1) A262, May 2023, DOI: 10.1093/sleep/zsad077.0598.