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BACKGROUND: Urinary Tract Infection Burden Among People with Neuropathic Bladder due to Spinal Cord Injury and Spina Bifida

Neuropathic bladder is a problem in which a person lacks bladder control. While neuropathic bladder can result from any trauma or disease of the brain or spinal cord, people with spinal cord injury (SCI) and spina bifida (SB) are nearly universally affected. Having issues with Urinary Symptoms or Urinary Tract Infections (UTIs) are common in the neuropathic bladder population.

While UTI is a major chronic and recurrent health condition for people with neuropathic bladder, it is also a major worldwide public health problem with staggering economic impact and potential for human suffering. UTI is associated with significant burden to the US population, it is responsible for even greater burden to people with neuropathic bladder, and this research study emphasizes a gap for people with neuropathic bladder due to SCI and SB who often have multiple chronic health conditions.

The PCORI project will;

  • Develop, validate, and assess a Urinary Symptom Questionnaire for use in people with neuropathic bladder (USQ-NB)
  • Develop and pilot a Self-Management Protocol using Probiotics (SMP-UTI) for urinary symptoms utilizing a readily available¬†Lactobacillussupplement that the patient self-administers (or administers with caregiver assistance).


We are currently looking for participants with SCI and SB using intermittent catheterization as your bladder management technique to participate in an one-hour online or phone focus group to discuss urinary symptoms.

If you are interested in participating or have questions about the study please contact:

Inger Ljungberg
202 877-1694