We investigated the prevalence of narcolepsy using a well-defined whit
e population previously used for epidemiological investigations: the F
innish Twin Cohort. The Cohort consists of 13,888 monozygotic and dizy
gotic twin pairs born before 1958. There were 16,179 individuals who p
articipated in the study, with a 77.3% response rate. The study method
ology included a questionnaire covering sleep and alertness, the Ullan
linna Narcolepsy Scale (UNS), a stale specifically developed and teste
d for the study, telephone interviews, and finally, clinical evaluatio
n, polygraphic recording, and HLA blood typing. Seventy-five subjects
were selected for telephone interviews and laboratory evaluations base
d on data from both questionnaires. Five of them were strongly suspect
ed of narcolepsy, but laboratory data identified only 3. All were dizy
gotic (fraternal) twins discordant for the disease with a negative fam
ily history and presence of DR2 DQwl (i.e., DRw15 DQw6, new World Heal
th Organization classification). The prevalence of narcolepsy in the F
innish population is 0.026% (95% confidence interval, 0.0-0.06). This
prevalence is lower than that reported in studies performed without po
lygraphic recording and is close to that reported in 1945 in the black
U.S. population. The tools developed to perform this study, the large
st population study of its kind yet performed, can now be used for oth
er population investigations.