Spina bifida congress catalyzes global collaboration to improve patient care

Amsterdam, September 21, 2023 – A supplement to the Journal of Pediatric Rehabilitation Medicine (JPRM) published by IOS Press, presents a compendium of abstracts from the 2023 World Congress on Spina Bifida Research and Care. The issue not only serves as a repository, but also as a catalyst to continue the international dialog on research, practical challenges, and real-life solutions for individuals living with spina bifida (SB), their families, and care partners.

According to co-Guest Editor Jonathan Castillo, MD, MPH, Chief of Developmental Medicine in the Department of Pediatrics, Children’s Hospital & Medical Center, University of Nebraska College of Medicine, Omaha, at this year's Congress the unmistakable spirit of an international community dedicated to SB care became manifest.

Dr. Castillo explains: "There are many innovative research activities in nearly all aspects of SB care across numerous countries around the globe. From prenatal repair to adult care, both SB care and research are rapidly increasing in complexity. The involvement of the SB community is becoming more and more evident among investigational activities."

The 2023 World Congress attracted an unprecedented number of thought leaders from more than 100 health and research institutions across 18 countries. As the only conference dedicated solely to SB, it showcased the landscape of research and addressed gaps and opportunities in SB care. It included 135 abstract presentations and another 89 abstract posters. The abstracts, and ultimately the larger work they represent, are anticipated to continue to shape the future of spina bifida care for years to come.

On behalf of the Congress' organizing body, the Spina Bifida Association, co-Guest Editor of the issue, Judy Thibadeau, RN, MN, Director of Research and Services, Spina Bifida Association, adds: "The World Congress, designed for researchers, healthcare providers, and individuals living with SB, is a forum to make new connections, develop relationships across disciplines, establish collaborations for future research projects, and discuss the research driving the care for those with SB."

Topics in this special collection of abstracts include urology, neurosurgery, global health, prenatal surgery, and transition to adult care, among others. SB care has required fresh approaches to address its many emerging challenges amidst the global community.

"Ultimately, through the dissemination of this corpus of abstracts, we hope that professionals will be aided and inspired to continue to improve the education, advocacy, and care among the many communities of individuals affected with SB globally," commented co-Guest Editor Tim Brei, MD, Spina Bifida Association, Arlington, VA, and Department of Pediatrics, Division of Developmental Medicine, Seattle Children’s Hospital, and the University of Washington School of Medicine.

A special emphasis at this year’s Congress was education and employment to improve quality of life. The new evidence presented sharply underscored the high prevalence of underemployment and the paucity of post-secondary education among individuals living with SB. The numerous findings that echo these findings ultimately highlighted the importance of early interventions and research activities focused on issues related to cognition and early developmental milestones in the lives of individuals with SB.

“Sustaining the international dialog that took place at the World Congress will be essential in mitigating the loss of momentum in the hard-fought collaboration now created,” adds co-Guest Editor Heidi Castillo, MD, Department of Pediatrics, Developmental Medicine, Children’s Hospital & Medical Center, University of Nebraska College of Medicine, Omaha. “We all would agree that more significant progress is made when we work synergistically; yet continuing the multicenter outreach between conferences requires dedicated energy and vision. It is our hope that a new generation of professionals will leverage today’s technology to remain in close contact moving forward.”

Dr. Jonathan Castillo observes: “In our current global context, neither research nor advocacy is done in a vacuum. From clinical care to SB-related education, the value and necessity of our international community of professionals is self-evident. Therefore, it is my hope that activities such as this World Congress will continue to pave a path forward for true international collaboration.”

JPRM's Editor-in-Chief Elaine Pico, MD, UCSF Benioff Children’s Hospital Oakland, is delighted to have been able to publish these abstracts as a supplemental issue to the journal: "The abstracts add so much to our spina bifida literature and truly represent a global effort to address a complex medical condition." 

Spina bifida (split spine) is a birth defect that occurs when an embryo's neural tube is developing but does not form properly. The neural tube eventually becomes the baby's brain, spinal cord and the tissues enclosing them. Although the exact cause of spina bifida is still unknown, it is believed that a complex mix of both genetic and environmental factors act together to cause the condition. Folic acid supplementation in the child-bearing years is known to decrease the risk.