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OBJECTIVE/BACKGROUND The real-world experience of people with narcolepsy is not well understood. PATIENTS/METHODS The Nexus Narcolepsy Registry (NCT02769780) is a longitudinal, web-based patient registry of self-reported data from adults with physician-diagnosed narcolepsy. Surveys were electronically distributed every 6 months; the current analysis reports registry population demographics, narcolepsy diagnosis journey, and predictors of diagnostic delays. RESULTS The registry population included in this analysis (N = 1024) was predominantly female (85%) and White (92%), with a mean age of 37.7 years. Most participants had education/training beyond high school (93%). Mean (median) reported ages at narcolepsy symptom onset, first consultation for symptoms, and narcolepsy diagnosis were 18.1 (16), 26.4 (24), and 30.1 (28) years, respectively. A majority (59%) of participants reported ≥1 misdiagnosis, and 29% reported consulting ≥5 physicians before narcolepsy diagnosis. More than half (56%) of participants' first consultations for narcolepsy symptoms were with a general practitioner, whereas the diagnosing clinician was usually a sleep specialist (64%) or neurologist (27%). Pediatric symptom onset was associated with a longer mean interval to first consultation than adult symptom onset (10.7 and 4.6 years, respectively; P

The aim of the study was to compare the prevalence, type, and severity of sleep apnea during the acute phase of ischemic stroke among patients either receiving or not receiving thrombolysis.We recruited 246 consecutive adult ischemic stroke patients. Patients underwent cardiorespiratory sleep study with portable three-channel device during the first 48 h after the symptom onset of ischemic stroke.We enrolled 110 (65.5% male) stroke patients in the thrombolysis group and 94 (59.6% male) in the nonthrombolysis group. In the thrombolysis group, the median National Institutes of Health Stroke Scale (NIHSS) score was higher (5.5) compared to the nonthrombolysis group (2.0) (p 0.001). There was a lower incidence of lacunar (17.3% vs 36.2%, p = 0.002) and cerebellar (2.7% vs 16.0%, p 0.001) strokes and a higher frequency of middle cerebral artery syndrome (60.9% vs 33.0%, p 0.001) in the thrombolysis group compared to the nonthrombolysis group. Sleep apnea defined as an apnea-hypopnea index (AHI) ≥ 5/h was diagnosed in 186 (91.2%) patients, its prevalence being higher in the thrombolysis (96.4%) compared to the nonthrombolysis (85.1%) group (p = 0.007). The mean baseline AHI was 33.7/h in the thrombolysis group compared to 26.8/h in the nonthrombolysis group (p = 0.017).Sleep apnea was present in the vast majority of ischemic stroke patients. The stroke patients treated with thrombolysis were more likely to have sleep apnea, to have elevated NIHSS score at admission, and to be younger. Sleep apnea was more severe among those receiving thrombolysis as compared to those who were not.URL: http://www.clinicaltrials.cov. Unique identifier: NCT01861275.

Objective This study was designed to evaluate the associated risk of RLS with pregnancy in relation to the family history and the age of symptom onset of RLS. Methods and subjects Data from a prior RLS family history study in which 1019 subjects (527 males, 492 females) were interviewed, provided a diagnosis and characterization of RLS and determination of pregnancy status on which the current study analysis was undertaken. Results In the family members of RLS probands, the prevalence of RLS was significantly higher for parous women than for nulliparous women (49.5% vs. 33.7%, OR = 1.92, 95% CI = 1.16–3.19) or for men (49.5% vs. 30.0%, OR 2.29, 1.69–3.10), but no different for nulliparous women compared to men (33.7% vs. 30.0%, OR 1.19, 0.72–1.96). When only those whose RLS started at or after age 30 were considered, similar differences occurred. These differences were not observed among family members of control probands. Conclusions These data indicate pregnancy has a major impact on the risk of developing RLS for those with a family history of RLS. This pregnancy effect appears to account for most of the gender differences often reported in overall RLS prevalence data.

Objective: RLS varies considerably in both frequency of occurrence in a family and in age of onset of symptoms. Patients whose RLS symptoms start before or at age 45 have many more affected relatives than those whose symptoms start later, suggesting etiological differences. When etiology differs, factors affecting severity may differ. This study compares the effects of current age and serum ferritin on RLS severity for early- and late-onset (over 45) RLS.Design and methods: RLS severity was evaluated using a validated clinical severity scale and sleep efficiency on a standard polysomnogram. Data from 26 consecutive RLS patients (14 early- and 12 late-onset) who met study criteria were analyzed.Results: Age-of-onset groups showed no significant differences in age, gender and RLS symptom severity. Regression analyses showed significant (P

Background : There can be a long interval from the onset of symptoms before a diagnosis of narcolepsy is made. There are no multivariate analyses reported in the literature of factors that may contribute to this delay. The aims of this study were to describe the delay in diagnosis of people with narcolepsy living in the UK and to identify associated factors. Methods : The study comprised a postal survey of 500 members of the Narcolepsy Association UK, which included questions regarding age of onset of symptoms, year of diagnosis and subject demographics. Cox's proportional hazards regression was performed. Results : A total of 313 questionnaires were returned of which 219 had been completed sufficiently for analysis. The interval between symptom onset and diagnosis ranged from within 1 to 61 years with a median of 10.5 years. Multivariate analysis showed that the presence of cataplexy as one of the initial symptoms and a more recent year of symptom onset were the only factors associated with time to diagnosis. Conclusions : We have confirmed that the diagnosis of narcolepsy can be delayed for many years particularly when cataplexy is absent initially. The delay in diagnosis in the UK appears to be decreasing, probably through greater doctor and patient awareness of the clinical manifestations of narcolepsy.