SBA: Research in Action

SBA: Research in Action

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Have you been wondering what we’ve been up to lately? Or wondering what’s been going on in the world of research? Since 1973, research has been an important part of SBA’s mission. We’ve been promoting scientific investigation into the intricacies of Spina Bifida and encouraging young investigators to enter the field.

Since 2008, SBA has also worked closely with the Centers for Disease Control & Prevention’s (CDC) National Center on Birth Defects and Developmental Disabilities, monitoring data that comes out of its National Spina Bifida Patient Registry to improve clinical care and develop a foundation for future research.

Thanks to generous support from our community, SBA has reached new milestones and we want to share them with you! Here’s a look at a few of our recent achievements.

Clinic Projects

  • Screen Shot 2017-07-11 at 1.01.48 PM.pngSBA worked with the CDC and Registry clinics to create and implement a wound care education campaign that takes into account the executive function and learning difficulties that many members of our community face. The Did You Look? campaign is currently being rolled out to select clinics across the nation. You can access these materials here.


  • SBA helped create urological protocols aimed at protecting the kidneys of children from birth to 5 years that are now being tested in select Registry clinics. With successful adoption, we hope we can help curb renal failure later in life.


  • Last year, SBA launched its Adult Spina Bifida Survey, which collected demographic, behavioral, and healthcare information from more than 1,000 respondents. We know that adults living with Spina Bifida struggle to find appropriate services and care, but there have been no statistics to back up those claims. Now that we have some data, we can use it to determine what resources need to be developed or expanded for the adult Spina Bifida population.Screen Shot 2017-07-11 at 1.13.04 PM.png

New Health Care Guidelines

  • SBA brought together more than 80 clinicians to review the largest body of research assembled to date on Spina Bifida and related care issues. Working groups tackled 26 different topic areas and then held a consensus meeting to develop new healthcare guidelines for ALL individuals living with Spina Bifida. These guidelines are being finalized now and will be published and placed into an app that will allow physicians easy access.

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World Congress

  • In March, SBA hosted its Third World Congress on Spina Bifida Research and Care, a gathering of more than 370 medical professionals from the U.S. and 23 other countries. Attendees discussed the latest in research, identified gaps, and developed connections between disciplines – all with the goal of coordinating care and mapping a brighter future for those living with the condition.


SBA greatly appreciates your ongoing support. We couldn’t do what we do without you!

Click here to see the original release for this update.

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