Spina Bifida Surveillance across Time And Regions (SBSTAR)
Project Description
Spina Bifida (SB) is a common birth defect that happens when the spine doesn't develop correctly while a baby is growing in the womb. The health effects of SB can vary a lot depending on where the spine is affected. People with SB may need help with things like moving, bladder control, and learning delays throughout their lives. However, we don't know much about how SB affects health in the long term because most research is focused on children. ARID lab is working with the CDC on a project to collect health information from SB patients of all ages across the country to improve their health and quality of life.
Objectives
1. Surveillance Capacity
- Conduct population-based surveillance of SB across all ages using:
- Arizona Birth Defects Monitoring Program (ABDMP): Tracks ~40 birth defects, including SB.
- Vital Records (ADHS): Matches birth/death certificates to identify SB cases and outcomes.
2. Data Management & Reporting
- Link and standardize data across sources to ensure completeness and quality.
- Create anonymized SB datasets for submission.
3. Dissemination
- Share findings with stakeholders via social media and publications.
- Collaborate with CDC on data analysis and dissemination (e.g., manuscripts, DAPS
Resources
We will provide resources on our website once they are available
