Advances in spina bifida care: The global journey toward dignity,inclusion,and innovation

Abstract

For nearly a decade, the special issue for spina bifida (SB) in the Journal of Pediatric Rehabilitation Medicine (JPRM) has become an epicenter for qualitative, state of the art, and innovative SB research. It has been noted that the concept of “blue marble health,” a policy framework to illustrate trends in the geographic distribution of neglected diseases affecting at-risk populations, may also have a place in illustrating the SB care paradigm in high-income countries such as those in North America and Europe. Concurrently, JPRM has dawned to provide insight into SB care worldwide, both in the Global North as in the Global South. Also in recent years, the Guidelines for the Care of People with Spina Bifida, a product of the Spina Bifida Association (SBA) Collaborative Care Network cooperative agreement with the National Center on Birth Defects and Developmental Disabilities in the Centers for Disease Control and Prevention, have mapped the advance. The SBA continues to catalyze open and in-person dialogue among clinicians and investigators. The 2025 Spina Bifida Clinical Care Meeting, hosted by Shriners Children's Northern California, included the involvement of adult members of the SB community, parents, clinicians, and researchers. Subsequently, this special issue includes state of the art articles initially presented at this conference. Now it is up to all of us to uphold the standard as we embark onto equitable and sustainable development of opportunities for those affected by SB across our diverse and global community.

For nearly a decade, the special issue for spina bifida (SB) in the Journal of Pediatric Rehabilitation Medicine (JPRM) has become an epicenter for qualitative, state of the art, and innovative SB research. ¹ Concurrently, the concept of “blue marble health,” was elucidated in 2013 as a policy framework to illustrate trends in the geographic distribution of neglected diseases affecting at-risk populations that live not only in low-income countries but also in segments of the populace in wealthier economies. ² Since that time, it has been noted that this framework may also have a place in illustrating the SB care paradigm in high-income countries such as those in North America and Europe. ³

Expediently, JPRM has dawned to provide insight into SB care worldwide, both in the Global North and in the Global South. From fetal interventions to adult management, this journal's international platform on innovative clinical services and research continues to bring investigators together from all corners. As an example, in this eighth special issue, investigators from Qatar share their experience and some unique cultural aspects that are infrequent in other areas of the world.

Also in recent years, quantifiable new horizons have been charted and coursed. The Guidelines for the Care of People with Spina Bifida, a product of the Spina Bifida Association (SBA) Collaborative Care Network cooperative agreement with the National Center on Birth Defects and Developmental Disabilities in the Centers for Disease Control and Prevention, have mapped the advance.^4,5 Although momentous gains in the quality of care and the standardization of services have ensued with their publication and dissemination, much work remains especially among historically underserved populations.

Highlighting the continued gaps in the provision of care for individuals affected by SB, in this issue Kelly et al. report on the continued need of insurers to cover catheterization supplies and the substantial cost burden this lack of coverage signifies. Such reports emphasize the considerable advocacy and policy change that still needs to occur to render dignity and appropriate levels of care to all individuals and families affected by SB.

In the United States, the SBA continues to catalyze open and in-person dialogue among clinicians and investigators. The 2024 Spina Bifida Clinical Care Meeting, hosted by Shriners Children's Northern California, included the involvement of adult members of the SB community, parents, clinicians, and researchers. This special issue includes state of the art articles initially presented at this conference which report on SB-related sleep disordered breathing and bladder biosensors. While these topics demonstrate the tremendous advancements that have been made in SB healthcare, they also reveal the long road ahead in the journey toward universal provision of services.

As JPRM continues to feature innovative SB research and clinical care standardization, we look forward with hope to future research and advocacy work so that best care practices can be implemented to continue to transform care globally for all individuals with SB. Furthermore, we remain encouraged by the passion embodied at the SBA's Clinical Care Meeting, having witnessed so many serving with the commitment to an interdisciplinary approach while upholding human dignity.^6,7 Now it is up to all of us to uphold the standard as we embark onto equitable and sustainable development opportunities for those affected by SB across our diverse and global community.