Many young adults with disabilities are reaching adulthood without the skills to successfully use the adult health system or to support themselves. Children with disabilities move through the usual childhood development stages as do their nondisabled peers, yet they face additional challenges that accompany their specific condition. When the issues of self-care, education, employment, and independent living are not addressed early in life, lack of attention to these issues may negatively impact the future achievement of developmental milestones. The young person may struggle in caring for him or herself and may not make the transition to adult living with the associated health care choices.

Advances in medical technology have increased the life expectancy of children born with spina bifida (SB). Until the last several decades, these children were not expected to live to adulthood; thus, plans for life after childhood were not made or considered. In a study of all live infants born with SB between 1979 to 1994 in Atlanta, Georgia, the survival rate to 1 year was 87.2%, and to 18 years, 78.4%. This is the first generation where larger numbers of persons with SB are surviving to reach adulthood. However, little is known regarding best practices to aide young persons with SB in achieving successful transition to adult roles such as: employment, independent living, and effective self-management of health routines. The “Evidence-Based Practice in Spina Bifida” conference was convened in Washington, DC, in 2003 to identify research and practice priorities. The dearth of sound research on which current treatments are based was detailed by Liptak in the conference proceedings. Evidence-based research is lacking regarding the multiple and complex issues that affect medical, social, and psychological aspects of life for children with SB, which may impede their transition to independence as adults.

Over the past several years, the Spina Bifida Association (SBA) and the Centers for Disease Control and Prevention (CDC) have collaborated to develop the National Spina Bifida Program in an effort to address the need for increased research in SB. A life course model to facilitate a developmental approach to realize healthy, satisfying participation in adult life has been developed for persons affected by SB. Children with complex conditions like SB, may not reach the usual developmental milestones without specific attention and support. The multiple and medically demanding issues associated with conditions like SB may preclude the necessary and time sensitive assessment of developmental milestone achievement.

Mechanisms to allow for pooling of data across SB clinics throughout the United States include the development of a patient registry and the SB electronic medical record (EMR). As described below, the purpose of the SB EMR is to improve clinical care by promoting the systematic collection of demographic, intervention, and outcome data. Those clinics participating in the initial version of the patient registry have the opportunity to use the SB EMR to collect patient registry and other clinical data. Additional information regarding the patient registry is discussed later in this article. The SB EMR will eventually integrate the developmental life-course model to include age-specific prompts facilitating the clinician’s and family’s identification of the individual’s achievement of developmental milestones. If milestones are not being accomplished within the appropriate age-range, the current Life-Course Model web site can also provide the measure of milestone accomplishment, recommendations of interventions to assist with the milestone, and the follow-up that may provide attention to this important part of growing up to achieve self-sufficiency as an adult.