Gaps and opportunities: an agenda for further research, services, and program development in spina bifida

In this article an agenda is discussed for further research, services, and program development identified in the development of the Life Course Model Web site for individuals with spina bifida, their families and the health care providers who work with them. The gaps identified during development of the Life Course Model Web site revealed that there has been minimal progress made on the research agenda since the 2003 consensus document, "Evidence-Based Practice in Spina Bifida: Developing a Research Agenda" or the summary document from the First World Congress on Spina Bifida Research and Care gathering, "The Future is Now," in 2009. Gaps are delineated in the three main areas of the transition curriculum (self-management/health, personal and social relationships, and employment/income support), and recommendations for future research and program development are proposed.