Neurogenic bowel dysfunction affects more than 80% of individuals with spina bifida and remains one of the most significant challenges impacting health, independence, and quality of life. In a recent article in AUANews, Maryellen Kelly, DNP, MHSc, an alumnus of the Duke University K12 Program, and David Chu, MD, MSCE, co-investigator of the CAIRIBU Children’s Hospital of Philadelphia (CHOP) P20 Center, highlight the urgent need for stronger evidence to guide bowel management. They introduce the Bowel Continence Across the Lifespan in Spina Bifida (BCALS) study, a large, patient-centered research initiative designed to address this critical gap.

Despite current treatment strategies, fewer than half of individuals with spina bifida achieve bowel continence, leaving many at risk for complications including urinary tract infections, skin breakdown, and reduced quality of life. BCALS, a five-year study funded by the Patient-Centered Outcomes Research Institute (PCORI), will compare the effectiveness of two commonly used bowel management approaches – retrograde and antegrade enema programs – in 943 children and adults with spina bifida across 24 medical centers in the United States.

In addition to evaluating continence outcomes, the study will examine quality of life, self-management, healthcare utilization, and patient-reported experiences. A defining feature of BCALS is its commitment to patient engagement: individuals with spina bifida, caregivers, and advocacy organizations helped shape the study’s design, ensuring that the research addresses outcomes that matter most to the community.

By generating high-quality evidence to inform clinical decision-making, BCALS represents an important step toward improving care for individuals with neurogenic bowel dysfunction.

During her time as a K12 Scholar, Dr. Kelly’s research focused on lower urinary tract symptoms for patients with diabetes. Specifically, Dr. Kelly investigated the prevalence of these symptoms in children with diabetes and evaluated possible treatment and prevention options. Dr. Kelly also received a CAIRIBU Collaboration Award to study the composition of the urinary microbiome in children alongside Tanya Sysoeva, PhD and Lisa Karstens, PhD, both of whom are active members of the CAIRIBU Urobiome Research Interest Group.

With support from the CHOP P20 Center, Dr. Chu works alongside PI Gregory Tasian, MD, MSc, MCSE and co-investigator Jonathan Ellison, MD, to improve understanding of outcomes for children who have kidney stones and have undergone surgery. Using data from trials led by Dr. Tasian and from the national patient-centered research network PCORnet®, Dr. Chu seeks to understand who is most at risk of experiencing severe stent-related symptoms.

Together, their research exemplifies CAIRIBU’s commitment to advancing collaborative, patient-centered research that addresses complex non-malignant urologic conditions and improves the lives of patients across the lifespan.