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Understanding the Natural Progression of Spina Bifida: Prospective Study
Judy Thibadeau1, Matthew R Reeder2, Jennifer Andrews3
1National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA, United States.
Insights
This study prospectively followed children with spina bifida (SB) to understand their development and health. Recruitment varied by location, impacting participation rates, especially among minority groups.
Area of Science:
- Pediatric Health
- Developmental Pediatrics
- Birth Defects Research
Background:
- Spina bifida (SB) surveillance is common, but longitudinal, population-based studies on its natural history are lacking.
- Understanding SB comorbidities and secondary conditions can inform earlier interventions for improved developmental trajectories.
- This study addresses the need for better documentation of SB's life course progression.
Purpose of the Study:
- To prospectively assess the development, health, and condition progression in children with spina bifida (SB).
- To evaluate and refine the data collection methodology for studying SB cohorts.
- To provide insights into the long-term health and developmental needs of individuals with SB.
Main Methods:
- Recruited parents of children aged 3-6 years with spina bifida (SB) in Arizona and Utah.
- Collected data via medical records, parent reports (family functioning, child behaviors, self-care, mobility, health), and child neuropsychological testing.
- Documented recruitment processes and evaluated data collection methods.
Main Results:
- 152 eligible individuals identified; 101 parents consented to participate.
- 81 participants completed the full protocol, 20 completed a partial protocol.
- Recruitment and participation rates varied significantly by site, with differences in demographics (Hispanic/non-Hispanic, male/female) observed between Arizona and Utah.
Conclusions:
- Site-specific differences in case identification, ascertainment, and IRB processes influenced recruitment.
- Recruitment restrictions and minority proportions likely affected participation rates more in Arizona than Utah.
- Methodological evaluation is crucial for future longitudinal studies of spina bifida cohorts.
Background:
Spina bifida (SB) is monitored through birth defects surveillance across the United States and in most developed countries. Although much is known about the management of SB and its many comorbid conditions in affected individuals, there are few systematic, longitudinal studies on population-based cohorts of children or adults. The natural history of SB across the life course of persons with this condition is not well documented. Earlier identification of comorbidities and secondary conditions could allow for earlier intervention that might enhance the developmental trajectory for children with SB.
Objective:
The purpose of this project was to assess the development, health, and condition progression by prospectively studying children who were born with SB in Arizona and Utah. In addition, the methodology used to collect the data would be evaluated and revised as appropriate.
Methods:
Parents of children with SB aged 3-6 years were eligible to participate in the study, in English or Spanish. The actual recruitment process was closely documented. Data on medical history were collected from medical records; family functioning, child behaviors, self-care, mobility and functioning, and health and well-being from parent reports; and neuropsychological data from testing of the child.
Results:
In total, 152 individuals with SB were identified as eligible and their parents were contacted by site personnel for enrollment in the study. Of those, 45 (29.6%) declined to participate and 6 (3.9%) consented but did not follow through. Among 101 parents willing to participate, 81 (80.2%) completed the full protocol and 20 (19.8%) completed the partial protocol. Utah enrolled 72.3% (73/101) of participants, predominately non-Hispanic (60/73, 82%) and male (47/73, 64%). Arizona enrolled 56% (28/50) of participants they had permission to contact, predominately Hispanic (18/28, 64%) and male (16/28, 57%).
Conclusions:
We observed variance by site for recruitment, due to differences in identification and ascertainment of eligible cases and the required institutional review board processes. Restriction in recruitment and the proportion of minorities likely impacted participation rates in Arizona more than Utah.
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