title: Surpassing the Target: How a Recruitment Campaign Transformed the Participant Accrual Trajectory in the Epilepsy Phenome/Genome Project.
abstract: Participant recruitment challenges pervade the majority of publicly funded clinical trials. However, little is known about methods for enhancing participant accrual. The Epilepsy Phenome/Genome Project (EPGP), a multicenter study funded by the National Institute of Neurological Disorders and Stroke (NINDS), aimed to enroll a total of 5,250 participants to better understand the genetic causes and phenotypic manifestations of epilepsy. However, similar to other trials, EPGP encountered recruitment challenges, and by the end of its first year, net enrollment was only 48% of the target for that time. To address this, EPGP established a National Participant Recruitment Campaign and began implementing and tracking the enrollment outcomes of a variety of proven and relatively novel recruitment methods. At the conclusion of the project, EPGP had successfully enrolled a total of 5,445 participants, thus surpassing its enrollment target. Data pertaining to EPGP's National Participant Recruitment Campaign was analyzed retrospectively, and the results are reported here, so that other multicenter trials may consider these methods in their recruitment planning and potentially avoid the costly repercussions of participant accrual issues.
authors.affiliation: Ophthalmology, Children's Hospital Los Angeles, Los Angeles, California, USA.
authors.forename: Kathleen
authors.initials: K
authors.lastname: McGovern
authors.affiliation: Neurology, University of California, San Francisco, California, USA.
authors.forename: Catharine Freyer
authors.initials: CF
authors.lastname: Karn
authors.affiliation: Neurology, University of California, San Francisco, California, USA.
authors.forename: Kristen
authors.initials: K
authors.lastname: Fox
mesh_terms: D000329:Advertising; D002986:Clinical Trials as Topic; D004827:Epilepsy / Q000175:diagnosis / Q000235:genetics* / Q000503:physiopathology; D005819:Genetic Markers; D020022:Genetic Predisposition to Disease; D015894:Genome, Human; D023281:Genomics / Q000379:methods; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D033181:Information Dissemination; D008389:Marketing of Health Services; D015337:Multicenter Studies as Topic; D018579:Patient Selection; D010641:Phenotype; D035842:Research Subjects / Q000523:psychology*; D012189:Retrospective Studies; D018401:Sample Size; D013997:Time Factors
chemical_list: D005819:Genetic Markers
keywords: clinical trials; participant accrual; study design