KJ Sawin et al. Gaps and opportunities: an agenda for further research, services, and program development in spina bifida. Pediatric Clinics of North America, 2010;57:1041-1057.

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 by Sawin and colleagues 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.

WHAT THE STUDY MAY MEAN TO YOU AS A HEALTH CARE PROVIDER: 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.

WHAT THE STUDY MAY MEAN TO YOU AS A HALTH CARE CONSUMER: If you have spinal bifida, it is imperative that you participate and take part in a program for your conditions. Efforts to achieve this goal are already being undertaken, although the approach is moving slowly. You might be able to enroll in one of these early programs. With spina bifida, the push for self-management needs to come from the patients and their families.