With your help, SBA is working to create the Spina Bifida Collaborative Care Network (SBCCN) to bring together the people who have the greatest impact on improving the care for people with Spina Bifida with a goal to increase the quality and length of their lives.

In truth, it takes several people to maintain and improve the health of a person with Spina Bifida. At a minimum, it takes parents, caregivers, health care providers, and the person with Spina Bifida. In addition, other people who bring different backgrounds and experiences are important. When completed, the SBCCN will include: SBA staff, Chapter directors, doctors, nurses, psychologists, the CDC, other organizations and groups, the parents of children with Spina Bifida, and adults with Spina Bifida.

Initially, the SBCCN will gather information from everyone that we can reach through focus groups, surveys, a look at the calls and emails that come into the SBA and other research activities. Ultimately, we also will use the findings from National Spina Bifida Patient Registry and information from clinics. The information we gather will serve as the building blocks to define standards and practices of good care for children, teens, and adults.

In the simplest terms, we will compare those standards and practices to what is currently being done, and we will all work together to make needed changes. This is why we call it a “Collaborative” Care Network

When completed, the SBCCN will be system that monitors, tracks, and evaluates patterns of care provided in Spina Bifida clinics, and other health care settings with the goal of improving and standardizing care by:

  • Coordinating effective communication between the Spina Bifida Association, clinics, individuals affected by SB and their families, and SBA Chapters;
  • Providing information to identify research priorities for the National Spina Bifida Patient Registry;
  • Advocating for the adoption of best practices; and
  • Monitoring and tracking those practices that bring about the best outcomes.

The full scope of the SBCCN is about developing the strategies, methodologies, and an infrastructure to get all of the players who contribute to the health of people with Spina Bifida working together so that we can improve the landscape for people with SB because good health leads to better lives.