53 Narcolepsy Statistics

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These narcolepsy figures cover the measurement periods and populations identified in the available source material. Estimates, surveys and forecasts retain their reported scope.

Key Narcolepsy Statistics

The main findings are:

  • Overall narcolepsy prevalence was 37.7 per 100,000 U.S. adults in a representative population study (2002-2015 survey waves).
  • NT1 prevalence was 0.0129% in males and 0.0120% in females (survey assessment; U.S. adult males and females).
  • Japanese claims prevalence rose from 5.7 per 100,000 in 2010 to 18.5 per 100,000 in 2019 (2010 and 2019; Japan claims population).
  • At diagnosis, narcolepsy was associated with anxiety at odds ratio 4.56 (95% CI 1.99-10.44) (community cohort at diagnosis; community narcolepsy cohort).
  • In REST-ON, 72.0% receiving once-nightly sodium oxybate 9 g were rated much or very much improved versus 31.6% on placebo (13-week phase 3 treatment period; adults with narcolepsy).
  • A systematic review found 31% of 84 working participants reported changing work because of narcolepsy (study summarized in 2021 systematic review; working people with narcolepsy).
  • The study translated 37.7 per 100,000 into an estimated 126,191 affected people in the contemporary U.S. population (study population estimate).
  • NT2 prevalence was 0.026% in males and 0.024% in females (survey assessment; U.S. adult males and females).
  • Japanese male prevalence was 6.2 per 100,000 in 2010 (Japanese males in claims database).
  • At diagnosis, thyroid disease odds were 3.07 times higher in the narcolepsy cohort (community cohort at diagnosis; community narcolepsy cohort).
  • Mean sleep latency increased 10.8 minutes with 9 g once-nightly sodium oxybate versus 4.7 minutes with placebo (13-week phase 3 treatment period; adults with narcolepsy).
  • Among those reporting work changes, 58% changed job type (study summarized in 2021 systematic review; working people with narcolepsy).
  • Narcolepsy type 1 prevalence was 12.6 per 100,000 people (2002-2015 survey waves; United States adults).
  • Combined NT1-or-NT2 prevalence was 0.039% in males and 0.036% in females (survey assessment; U.S. adult males and females).
  • Japanese female prevalence was 4.9 per 100,000 in 2010 (Japanese females in claims database).

Contents

Narcolepsy prevalence statistics in the United States and population estimates

Sleep-EVAL interview classification; not medical-record confirmation.

Population translation from the study prevalence; not a national case registry count.

NT1 defined as narcolepsy with cataplexy under ICSD-3.

NT2 defined as narcolepsy without cataplexy under ICSD-3.

Very rare outcome with a 95% CI of 0 to 11 per 100,000.

Wide interval reflects the rarity of the condition.

Follow-up participation differs from the initial wave.

Self-reported physician diagnosis; records were not requested.

Narcolepsy type 1 and type 2 prevalence by age, sex and diagnosis status

Sex-stratified estimates were not statistically different.

Combined symptom-based classification.

Age-stratified estimate had a wide confidence interval.

Estimate was not statistically distinct across age groups.

Age-stratified estimate was not statistically distinct across groups.

Counts only self-reported diagnosed cases, not all symptom-defined cases.

Self-reported diagnosis.

Claims-based diagnosed prevalence; changing coverage and recognition may affect the trend.

Claims-based estimate.

Claims-based diagnosed prevalence.

Longitudinal claims trend; not a standardized incidence cohort.

Range reflects the study’s claims definitions and annual variation.

Different definitions and MSLT-claim requirements prevent direct comparison.

Narcolepsy comorbidity statistics and associated health risks

Association, not causation; confidence interval is wide.

Association versus matched comparison group.

Association, not causation.

Very wide confidence intervals; OSA ascertainment and follow-up differ.

Extremely wide confidence interval indicates imprecision.

Association; trauma was identified from emergency-department records.

Narcolepsy treatment trial outcomes and medication-use statistics

Randomized trial result; treatment dose and eligibility limit generalization.

Trial outcome, not a population estimate.

Adjusted trial comparison.

Mean treatment-group changes; placebo response was substantial.

Adjusted comparison in one phase 3 trial.

Patient-reported scale in a selected trial population.

The abstract’s confidence interval is reproduced as reported.

Observational surveillance; nonadherence definition was timing-based.

Exposure equivalence is not the same as clinical outcome equivalence.

Narcolepsy quality-of-life, work and healthcare-burden statistics

Single underlying study and self-reported work history.

Small subgroup; denominator is the review’s reported n=15.

Small subgroup; not a population unemployment rate.

Small subgroup; not a population employment estimate.

Cost estimates depend on wage and productivity assumptions in the underlying analysis.

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