Spina Bifida Association Supports Federal Registry for Spina Bifida

About 166,000 people in the United States have spina bifida, according to the Spina Bifida Association (SBA), a voluntary organization that advocates on behalf of people who are affected by this birth defect. The Centers for Disease Control and Prevention (CDC) reports that the annual number of babies born with spina bifida exceeds 1,400 — 1 in every 2,758 births.

On their website, the SBA states, “Spina bifida is the most common permanently disabling birth defect that is associated with life.”

To keep track of and study the information about treating this pervasive birth defect, in 2008 the SBA helped establish within the CDC the National Spina Bifida Patient Registry (NSBPR), the only federally funded repository of research on spina bifida.

The NSBPR compiles data from clinics that work with individuals of all ages who have spina bifida. The NSBPR examines what clinics are doing, aiming to find the most effective treatments. The goals include:

  • Develop and revise standards of care and treatment best practices
  • Share information between health care providers throughout the country
  • Create benchmarks to improve care in spina bifida clinics
  • Identify clinics that provide the most useful care to patients

In addition to sharing the results of NSBPR research with the public, the CDC website also contains useful case studies and stories showing people thriving with spina bifida.

What Is Spina Bifida?

Spina bifida occurs when a baby’s neural tube fails to develop or close properly anywhere along the spine. This happens within the first few weeks of pregnancy, and it can cause mild to severe physical and intellectual disabilities, depending on the location and size of the defect and how the spine and nerves are impacted.

The three most common types of spina bifida are:

  • Myelomeningocele — parts of the spinal cord and nerves come through the open part of the spine, causing nerve damage. This can result in severe disabilities.
  • Meningocele — part of the spinal cord comes through the spine like a sac that is pushed out. Nerve fluid is in the sac, and there is usually no nerve damage. This can result in minor disabilities.
  • Spina bifida occulta — the small gap in the spine is barely noticeable. About 15 percent of people who have this don’t even know it. This is the mildest form and rarely causes disabilities.

Because it’s possible to diagnose spina bifida during pregnancy, it’s important to get regular prenatal checkups.

What Causes Spina Bifida?

According to the SBA, the causes of spina bifida are unknown but may result from a combination of genetic and environmental components. The organization emphasizes: “It’s important to know that neural tube defects like Spina Bifida are not entirely understood, and Spina Bifida is not something that is caused by the actions of the parents.”

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