An international pilot study of an Internet-based platform to facilitate clinical research in epilepsy: the EpiNet project.

PURPOSE: We created an epilepsy patient database that can be accessed via the Internet by neurologists from anywhere in the world. The database was designed to enroll and follow large cohorts of patients with specific epilepsy syndromes, and to facilitate recruitment of patients for investigator-initiated clinical trials. METHODS: The EpiNet database records physician-derived information regarding seizure type and frequency, epilepsy syndrome, etiology, drug history, and investigations. It can be accessed from any country by approved investigators via a secure, password-protected Website. All data are encrypted. The database is for both research and clinical purposes. Investigators were invited to register any patient with epilepsy, but were particularly encouraged to register patients when uncertain of the optimal management. Participation required approval from investigators' ethics committees and institutional review boards, and all patients or their caregiver provided written informed consent. Patients were not enrolled in clinical trials in this pilot study. KEY FINDINGS: The international pilot study recruited patients from September 2010 to November 2011. Sixty-four investigators or research assistants from 25 centers in 13 countries registered 1,050 patients. Patients with a wide range of epilepsy syndromes and etiologies were registered. Patients' ages ranged from 2 weeks to 90 years. SIGNIFICANCE: The Website was successfully used by doctors working in different health systems. The pilot study confirmed that this low-cost, collaborative approach to research has great potential. Large, multicenter cohort studies will commence in 2012, and randomized clinical trials are being planned. All epileptologists are invited to join this project.

Prevalence of Sleep Abnormalities in Indian Children With Autism Spectrum Disorder: A Cross-Sectional Study.

BACKGROUND: The prevalence of autism spectrum disorder (ASD) is on the rise. Apart from the core behavioral issues of impaired communication, impaired social interaction, and restricted and/or repeated behavioral phenotype, comorbidities like sleep problems are increasingly getting recognized as important determinants of management and overall quality of life. METHODS: This study was conducted in a tertiary care teaching hospital in northern India over a two year period. Children diagnosed with ASD and normally developing children (control subjects) aged 3 to 10 years were enrolled in the study. Both groups underwent sleep evaluation based on the Children's Sleep Habit Questionnaire. Children with ASD also underwent polysomnography, Childhood Autism Rating Scale, Childhood Behavioral Checklist, and Developmental Profile 3 assessments. RESULTS: The prevalence of poor sleepers among children with ASD and control subjects was 77.5% (confidence interval 66 to 86.5). and 29.2% (confidence interval 18.6 to 41.5), respectively (P < 0.001). The salient findings on polysomnography were reduced sleep efficiency, decreased rapid eye movement and slow wave sleep duration, and desaturation index>1. The Childhood Behavioral Checklist score was significantly high in poor sleepers compared with good sleepers on Children's Sleep Habit Questionnaire (P = 0.004). There was no correlation of Childhood Autism Rating Scale or Developmental Profile 3 score with sleep problems in children with ASD. CONCLUSIONS: Nearly three fourths of children with ASD have sleep abnormalities with a possible effect on the behavioral phenotype. The polysomnographic findings provide further insight with opportunity for pharmacological interventions. Screening for sleep problems is imperative for the appropriate management and overall improvement in quality of life in children with ASD.

Perceived trigger factors of seizures in persons with epilepsy.

PURPOSE: Little is known about the triggering factors (TFs) of seizures in persons with epilepsy (PWE). This study aimed to document the perception of PWE of factors that precipitated their seizures. MATERIALS AND METHODS: Data was obtained from 405 patients attending the Epilepsy Clinic at the All India Institute of Medical Sciences (AIIMS). This was analyzed using appropriate descriptive and inferential biostatistical methods. A Trigger Assessment Tool (TAT) was designed for this study. RESULTS: 89% of the participants reported at least one TF. Between one and ten TFs were endorsed. The most common TFs reported by the patients (in descending order) were found to be: Missing medication (40.9%), emotional stress (31.3%), sleep deprivation (19.7%), fatigue (15.3%), missing meals (9.1%), fever (6.4%), and smoking (6.4%). A significant association was seen among some of the commonly reported TFs (missing medication, sleep deprivation, emotional stress, and fatigue). CONCLUSION: TFs should be evaluated during the management of PWE. However, self perceived TF should be interpreted with caution and differentiated from actual TF. Future studies may consider empowering patients with avoidance strategies and self-control techniques done.