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,…
Spina bifida occurs when the neural tube fails to close during early fetal development, resulting in a range of neural tube defects (NTDs). The cause of spina bifida is not…
This article reviews the developmental considerations involved in helping the family of a child with spina bifida who needs to achieve bowel continence. Strategies for success based on an algorithm…
Spina bifida is the most common defect of the central nervous system. It is a congenital malformation of the spine with abnormal neural tube closure occurring between the third and…
This article provides information about the efforts to develop health care transition programs in four groups of patients: those with cystic fibrosis, spina bifida, and congenital heart disease, and childhood…
Based on the experience of 2 physicians from physiatry and developmental pediatrics, this article proposes a framework for improving care and outcomes for children with spina bifida. The combined skills…
This article describes the utility of a spina bifida-specific electronic medical record (SB EMR). Standardization and pooling of data through the SB EMR will facilitate development of increased knowledge for…
The Life Course Model for patients, families, caregivers, teachers, and clinicians was developed with support by the National Spina Bifida Program, National Center on Birth Defects and Developmental Disabilities, Centers…
An overview of the importance of “listening to consumers” is the primary theme of this article. This article features perspectives of consumers as to their transition experiences with descriptions of…
This article focuses on how the Life Course Model Web site can help family members build on the strengths of individuals with spina bifida and address areas of difficulty. A…
