Evaluation of the effectiveness of the application of the epilepsy phenotype/genome project information platform

  Nesbitt et al. of the University of California evaluated the use of the Epilepsy Phenotype/Genome Project (EPGP) information platform and published the results in the International Journal of Medical Informatics. ePGP is an epilepsy Research Network.  The goal of the EPGP is to collect detailed phenotypic information from 3750 epilepsy patients and 1500 epilepsy-free parents, obtain DNA samples, and ultimately obtain genotypes of the samples to discover new genes that cause epilepsy. To accomplish this program, EPGP has developed a reliable and stable web-based application for participant tracking, electronic data collection, data management, and phenotype analysis.  To date, a total of 3780 participants recruited have completed 20,957 study activities through this information platform. Satisfaction surveys show that more than 95% of respondents approve of the effectiveness of this information platform the vast majority of the time it is used.  The study demonstrates that the EPGP information platform successfully completes study management and phenotypic data collection and is able to meet the needs of large-scale multicenter research projects.