What question did this study set out to answer?

To estimate and compare the relative frequencies of narcolepsy type 1, narcolepsy type 2, and idiopathic hypersomnia using claims data.

May 10, 2026

0700 Relative Prevalence of Narcolepsy Type 1, Narcolepsy Type 2, and Idiopathic Hypersomnia: A Claims Database Analysis

Key Points

To estimate and compare the relative frequencies of narcolepsy type 1, narcolepsy type 2, and idiopathic hypersomnia using claims data.
Analyzed closed data from Komodo Health claims database (2018-2023) with ICD-10 codes for NT1, NT2, IH.
Included patients with ≥1 claim for NT1/NT2/IH and ≥2 relevant ICD-10 codes ≥30 days apart.
Performed descriptive analysis of demographic trends in age and sex.
Identified 26,003 patients eligible for analysis with NT1 prevalence at 9.4 per 100,000, NT2 at 29.1, and IH at 9.7 per 100,000.
NT2 diagnosed approximately 6 times more frequently than NT1 and nearly 3 times more than IH.
62% of patients were female, with distinct age distribution trends across different types.

Abstract

Abstract Introduction It is difficult to estimate exact prevalence rates of rare diseases, including central disorders of hypersomnolence (CDH). Retrospective claims data were used to estimate relative frequencies of narcolepsy type 1 (NT1), narcolepsy type 2 (NT2), and idiopathic hypersomnia (IH) and compare demographic trends across disorders. Methods Patients in the Komodo Health claims database with any diagnosis of NT1/NT2/IH (ie, ≥1 ICD-10 code 2022 or 2023) were identified. Patients in the closed data set (ie, 100% claim availability 2018-2023) and ≥1 claim for NT1/NT2/IH were included. Diagnosis was defined as ≥2 relevant ICD-10 codes ≥30 days apart. Patients with multiple, distinct CDH diagnoses were excluded. CDH prevalence in 2023 was calculated, and distribution of diagnoses by sex and age group were analyzed descriptively. Results The Komodo claims dataset included 154,750 patients with ≥1 NT1, NT2, or IH diagnosis in 2023. The prevalence of NT1, NT2, and IH was 9.4, 29.1, and 9.7 per 100,000 persons, respectively. Of the 154,750 patients, 114,961 were excluded because claim availability was incomplete from 2018-2023, and 13,786 were excluded for having multiple, distinct NT1/NT2/IH diagnoses. Thus, 26,003 patients were included in this analysis (NT1, 11%; NT2, 65%; IH, 24%). In total, 62% of patients were female (NT1, 65%; NT2, 60%; IH, 68%) and 36% were male (NT1, 34%; NT2, 39%; IH, 31%); 1% did not specify. Overall, 2% of patients were aged 0-17 years (NT1, 5%; NT2, 2%; IH, 2%), 9% were aged 18-24 years (NT1, 15%; NT2, 8%; IH, 9%), 11% were aged 25-34 years (NT1, 13%; NT2, 11%; IH, 12%), 20% were aged 35-44 years (NT1, 20%; NT2, 20%; IH, 22%), 42% were aged 45-64 years (NT1, 36%; NT2, 42%; IH, 43%), and 15% were aged ≥65 years (NT1, 12%; NT2, 17%; IH, 11%). Conclusion Exclusion of patients with uncertain diagnoses provides a complementary perspective in assessing relative frequencies of CDH. NT2 was diagnosed approximately 6 times more frequently than NT1 and nearly 3 times more frequently than IH. Limitations of objective tests, including polysomnography and multiple sleep latency testing in NT2 and IH, underscore the need to prioritize clinical assessments for diagnosis of CDH. Support (if any) Avadel Pharmaceuticals

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