From fortification and foetal surgery to healthy ageing: mentoring leadership through global health partnerships in spina bifida care

Abstract

Neural tube defects (NTDs) remain a significant global public health concern, affecting an estimated 300 000 live births annually. Spina bifida (SB), one of the most common NTDs, is associated with complex lifelong comorbidities including hydrocephalus, neurogenic bowel and bladder dysfunction, orthopaedic impairments and cognitive challenges that require coordinated multidisciplinary care across the lifespan. Although advances in prevention, foetal surgery, rehabilitation and assistive technology have improved outcomes, opportunities for sustained international professional learning remain limited.

This review describes the development and activities of the Spina Bifida Global Learning Collaborative. This international community of practice was established following the 2023 Spina Bifida World Congress to promote knowledge exchange, mentorship, leadership development and professional capacity building. Drawing on documented collaborative activities and reflections from regular virtual meetings between 2023 and 2026, we describe three recurring learning modalities: practice-informed dialogue, educational and professional training initiative and collaborative writing and academic exchange. Through sustained, low-cost international collaboration, participants have shared experiences across diverse healthcare systems and translated learning into locally adapted initiatives, including rehabilitation capacity building and aftercare programmes in Ethiopia, hybrid professional education initiatives in Scandinavia, assistive technology training in the Americas and collaborative research and student engagement across institutions. Rather than implementing centrally coordinated programmes, the collaborative functions as a catalyst for locally led innovation by connecting clinicians, researchers and advocates across disciplines and countries. These experiences suggest that international communities of practice can strengthen professional networks, foster mentorship, support leadership development and contribute to educating the next generation of professionals working in SB care. Sustained global partnerships may therefore represent an important strategy for improving lifelong care for individuals with SB across diverse health systems.

Background

Neural tube defects (NTDs), a group of serious birth defects of the central nervous system, are a largely preventable public health concern. Globally, it is estimated that approximately 300 000 live births are affected by NTDs yearly, resulting in approximately 88 000 deaths and 8.6 million disability-adjusted life years.¹ In the global south, NTDs are estimated to account for up to 29% of neonatal deaths attributable to observable birth defects.² Promisingly, folic acid fortification of commercially produced foods has been shown to be a significant factor in the prevention of NTDs, highlighting the importance of population-level preventive strategies.³ However, NTDs comprise a heterogeneous cluster of anomalies arising from the partial or total failure of the neural tube to close during early embryonic development; this defect in the spinal region is commonly termed spina bifida (SB).⁴ Individuals living with SB often experience a range of coexisting conditions such as hydrocephalus, cognitive difficulties, neurogenic bowel and bladder and various orthopaedic impairments. Despite these challenges, advances in medical care over recent decades have led to improved survival and increased life expectancy among affected individuals.⁵

Thus, given the complexity and extent of coexisting conditions, individuals with SB with or without hydrocephalus require coordinated, lifelong care encompassing prevention, neurosurgical intervention, rehabilitation, assistive technology and sustained community support.^{6 7} Despite advances in surgical and medical management, care delivery remains frequently fragmented across disciplines and life stages.⁸ Multidisciplinary, coordinated approaches are therefore essential for addressing the complex medical, functional and psychosocial needs associated with SB across the lifespan.⁹ Such approaches rely not only on clinical expertise but also on sustained collaboration among healthcare professionals, institutions and advocacy organisations within and across health systems. However, structured opportunities for sustained international dialogue and shared professional learning remain limited, particularly across heterogeneous health systems and across borders.

To respond to the fragmentation in health systems, multinational organisations such as the International Developmental Pediatrics Association have emerged to promote dialogue across disciplines and national contexts. In parallel, disability-specific initiatives are coalescing to provide more targeted responses. One such alliance is the Spina Bifida Global Learning Collaborative (SBGLC), a voluntary affiliation of professionals spanning multiple disciplines and continents.¹⁰ In 2023, the Spina Bifida World Congress served as the initial catalyst to bring together this international community of clinicians, advocates and researchers to foster cross-context exchange and mentorship in SB care. The aim of this work is to describe the ongoing development and core activities of SBGLC. As a global interdisciplinary learning collaborative focused on improving care for individuals with SB, this group also seeks to share key lessons from experiences in facilitating knowledge exchange, professional capacity building and mentorship with the goal of strengthening the global workforce and supporting high-quality care across the lifespan.

Establishment of the SBGLC

This narrative review is a reflective description of the development and activities of the SBGLC. It is based on documented activities, recurring themes discussed during monthly collaborative meetings—typically lasting 60 min—and initiatives that emerged through the network between 2023 and 2026. Examples included in this review were selected because they illustrated recurring areas of collaboration across participating countries and disciplines rather than representing all SBGLC activities.

In the wake of the 2023 Spina Bifida World Congress, sponsored by the Spina Bifida Association of America, a group of professionals convened to establish a community for mutual support and to provide mentoring opportunities. The SBGLC was subsequently formed to provide an informal structure, for practice-based knowledge exchange, as well as reflection of leadership and mentoring activities. The leadership of SBGLC established monthly virtual meetings to facilitate the sharing of clinical challenges, local leadership experiences, educational approaches and implementation strategies across diverse contexts. The intention of this cross-cultural engagement was to create a low-threshold, high-tolerance environment that enables rapid, multidirectional learning. At the time of writing, the SBGLC includes clinicians, researchers and advocates from different disciplines including neurosurgery, developmental paediatrics, urology, orthopaedics, physiotherapy, occupational therapy, psychology, public health and assistive technology, with members from seven countries across Europe, Africa, Asia and the Americas. The collaborative operates without formal funding and is coordinated by a small group of volunteers who organise meetings for the wider collaborative and document discussions. The collaborative also creates space for early-career participants to contribute questions and perspectives, which help shape ongoing discussions and areas of focus. This approach allows participants to both contribute expertise as well as acquire new knowledge, while giving or receiving mentorship and sharing global resources.

Experience of the SBGLC

Over the past 3 years, the SBGLC interdisciplinary network has increasingly functioned as a practice-based community for reflection and leadership development. New insights have emerged through engagement with diverse contextual realities, for example, the high prevalence of SB in Ethiopia compared with the low one in Sweden. To further illustrate how this collaboration operates in practice, we describe its structure, recurring learning formats and selected examples of how shared dialogue translated into locally adapted educational initiatives across participating contexts. While not all current initiatives will be outlined, this manuscript will highlight shared global resources within and beyond the networks (table 1) and some of the completed and ongoing interdisciplinary collaborations (figure 1). Notably, these activities are not centrally mandated or funded but instead emerged organically through sustained dialogue and mutual interest among participants.

Table 1. Resources in spina bifida care.

Organisation and website	Brief description
Bo Hjelt Foundation for Spina Bifida https://www.hjeltfoundations.org/spina-bifida-foundation	A philanthropic foundation that funds research on spina bifida, including genetic and preventive studies, and supports doctoral research in the field.
Centers for Disease Control and Prevention (CDC) https://www.cdc.gov/spina-bifida	Governmental organisation (USA) which provides funding for and findings from the National Spina Bifida Patient Registry (NSBPR), as well as educational materials.
CURE International https://cure.org	An international healthcare non-profit operating hospitals in Africa and Asia that provides surgical treatment for children with neurological and orthopaedic conditions, including spina bifida.
GAATO: Global Alliance of Assistive Technology Organizations https://www.gaato.org/	A non-profit association of legally established membership organisations with the purpose of creating global initiatives that advance equitable and reliable access to technology.
International Federation for Spina Bifida and Hydrocephalus https://ifglobal.org	A global umbrella organisation representing over 100 national spina bifida and hydrocephalus associations. It advocates for prevention of neural tube defects, access to multidisciplinary healthcare, disability rights and global collaboration among researchers, clinicians and patient organisations.
ReachAnother Foundation https://reachanother.org	An international non-profit working primarily in Ethiopia to prevent and treat neural tube defects. It supports surgical treatment for spina bifida and hydrocephalus, builds neurosurgical capacity, promotes folic acid fortification and strengthens multidisciplinary care systems.
Shine https://www.shinecharity.org.uk	A UK-based charity providing information, advocacy and support services to individuals and families affected by spina bifida and hydrocephalus. It offers education resources, counselling and programmes supporting independence and lifelong care.
Spina Bifida Association (SBA) https://www.spinabifidaassociation.org	A leading US-based non-profit focused on improving care and outcomes for people with spina bifida through research, clinical care guidelines, education, advocacy and community support programmes.
Spina Bifida Foundation https://www.spinabifidafoundation.org	A non-profit organisation founded by medical professionals and parents that focuses on prevention, rehabilitation, awareness and support for individuals living with spina bifida in India.
The American Academy of Pediatrics (AAP) https://www.aap.org/en/patient-care/spina-bifida	The AAP’s global mission, as a professional association, is to attain optimal physical, mental and social health and well-being for all children. A number of publications for spina bifida care have been developed, including videos, infographics, ECHO resources and a Toolkit for Transition to adult care.

Several international and regional organisations are actively engaged in the prevention, treatment and long-term care of individuals with spina bifida and hydrocephalus. These organisations support research, advocacy, clinical capacity building and community-based care, particularly in low- and middle-income countries where the burden of neural tube defects remains high.

ECHO, Extension for Community Healthcare Outcomes.

Figure 1. Geographic distribution of SBGLC-related activities. Highlighted countries indicate locations where collaborative initiatives, training activities, academic exchange or practice-based knowledge sharing have taken place through SBGLC participants and associated networks. SBGLC, Spina Bifida Global Learning Collaborative.

Practice-informed areas of influence

Through sustained dialogue, several clinical and educational domains consistently emerged, including folic acid fortification to prevent NTDs, the role of prenatal surgical closure, assistive technologies and neurodevelopmental, healthcare transition, as well as urologic management. Rather than constituting formalised thematic workstreams, these conversations enhanced cross-contextual awareness and informed locally driven initiatives undertaken independently by participants within their respective professional settings. For example, those in North America have partnered with the American Academy of Pediatrics (AAP) and the National Spina Bifida Patient Registry (NSBPR) to develop and/or distribute SB care resources, both in English and Spanish.¹¹ The collaboration with the AAP has produced publications ranging from videos, infographics, tele-mentoring Extension for Community Healthcare Outcomes programming, as well as professional and family guidance.^{12 13}

Folic acid fortification efforts

NTDs are conditions largely preventable with adequate maternal folate intake. In fact, fortification with folic acid periconceptionally has been documented to decrease the prevalence of NTDs by nearly 70%.^{3 14} Markedly, great divergence in these prevalence estimates persists between the Global North and the Global South.² Given that over half of all NTDs are routinely prevented by fortification, across the globe there have been efforts to fortify wheat products to curtail NTD incidence.¹⁵ Addressing this burden of disease globally requires dynamic collaborative efforts between clinicians, medical advocates and local policymakers.¹⁶

Nevertheless, even though recent legislation mandating fortification of staple cereal grains (such as wheat flour and corn masa) has begun across many nations, diverging NTD prevalence rates remain among the world’s populations.¹⁷ Therefore, a multidisciplinary alliance of neurosurgeons, paediatricians, epidemiologists, geneticists, public health professionals, food scientists and fortification policy experts was formed to advocate for fortification of staple foods worldwide. Through this Global Alliance for the Prevention of Spina Bifida (GAPSBi-F) many professionals advocate for fortification demonstrating the far-reaching and impactful role networks play not only in direct clinical care but also in public health advocacy.¹⁸

Foetal repair and collaboration

An area of recent scientific advances, that is still undergoing active long-term follow-up across institutions, is the area of foetal surgery for NTDs. To reduce morbidity associated with postnatal and open hysterotomy foetal repair—originally introduced through the Management of Myelomeningocele Study trial—minimally invasive approaches to SB repair have been developed.¹⁹ Texas Children’s Fetal Center at Baylor College of Medicine has contributed to the development of a two-port to three-port, multilayer fetoscopic myelomeningocele repair technique using a laparotomy-assisted approach.²⁰ Compared with the open hysterotomy technique, this fetoscopic approach has demonstrated improved maternal outcomes, including a lower risk of uterine rupture, the potential for vaginal deliveries and a decreased rate of preterm birth.²¹ The collaborative model has provided a platform from which to share learning from this approach with other institutions, including those in Mexico and Belarus. This allowed for shared learning of evaluative neurodevelopmental follow-up after this type of procedure. At the same time, it has facilitated mentorship of junior faculty as well as opportunities for collaborative research and joint publication development in an investigational Global North-Global South partnership.

Assistive technology

Building on the WHO’s Global Cooperation on Assistive Technology initiative²² and education outreach by the Global Alliance of Assistive Technology Organizations,²³ training activities have been implemented across several countries in Latin America (Asistiva: https://cursos.asistiva.com.ar/curso/wheelchair-service-provision). Through partnerships within the collaborative, expertise from Argentina contributed to a wheelchair workshop at a regional SB centre in Syracuse, New York, USA. The training emphasised the WHO-GATE 5P framework (People, Policy, Products, Provision, Personnel), focusing on professional competencies in wheelchair assessment, fitting and follow-up, not just equipment provision. Such initiatives reflect how knowledge exchange within the network can support local educational activities across diverse settings.

Education and professional training initiatives

Academic exchange within the network has catalysed a range of educational initiatives and professional training activities. Insights generated through virtual meetings have informed workshops and conference sessions in Germany, Malaysia, Guatemala, Sweden, Finland, Ethiopia and the USA. These initiatives have ranged from disability-focused education days to hands-on wheelchair workshops and interdisciplinary training sessions for physiotherapists and nurses. While locally organised, many of these initiatives were shaped by prior cross-cultural dialogue within the network.

In Sweden, the annual SB-Days meeting has transitioned to an online format, enabling broader participation among clinicians, researchers, trainees and individuals with lived experience. The meeting integrates national clinical sessions with internationally oriented research discussions, providing opportunities for doctoral and postdoctoral researchers to present their work and engage in scholarly exchange.

In Ethiopia, collaboration with the ReachAnother Foundation has supported the development of paediatric rehabilitation services for children with SB and hydrocephalus across multiple national Centres of Excellence. Training programmes for physiotherapists and multidisciplinary teams have expanded access to rehabilitation services, while the implementation of standardised clinical tools and follow-up systems has strengthened continuity of care.

Collaborative writing and academic exchange

One modality of cross-cultural engagement has involved collaborative writing and academic exchange. Bilingual writing partnerships across institutions have supported scholarly activities and fostered Global North-Global South student and trainee engagement. These collaborations have resulted in several conference presentations and peer-reviewed publications, reflecting cross-context perspectives shaped through the network discussions.^{8 12 24 25}

Discussion

Collaborative networks have been recognised as critical mechanisms for enhancing care in complex conditions requiring multidisciplinary and lifelong management.^{7 26} For individuals with SB with and without hydrocephalus, effective coordination among neurosurgery, developmental paediatrics, urology, orthopaedics, rehabilitation and community services is essential. However, opportunities for sustained international dialogue among professionals working in these domains remain limited. This work describes the continued development of the SBGLC as a sustained international learning network. Rather than operating as a formal research consortium, the collaborative functions as a community of practice in which clinicians, researchers and advocates exchange experiences, ideas and mentorship opportunities across diverse health systems and countries.

Within this framework, the SBGLC illustrates how low-threshold, regular interactions, such as monthly virtual meetings, can facilitate knowledge exchange and professional learning across nations. Through ongoing dialogue, participants share experiences from their local settings, reflect on challenges and adapt ideas to their own contexts, with the overarching goal of improving care for individuals with SB in their respective environments.

Importantly, the collaborative does not implement centralised programmes. Instead, it creates conditions for inspiration, connection and mutual learning which participants translate into locally driven initiatives. Examples described in this paper—including rehabilitation capacity building in Ethiopia, hybrid professional education in Scandinavia and assistive technology training initiatives in the Americas—illustrate how shared dialogue can stimulate locally adapted activities.

The SBGLC exemplifies how sustained, low-cost international partnerships can foster shared learning and stimulate locally meaningful initiatives. By sharing knowledge, experiences and practical approaches across settings, international learning networks can contribute to the education of the next generation of clinicians, researchers and advocates dedicated to improving lifelong care for individuals with SB.

Despite these encouraging experiences, international learning collaboratives also face important challenges. Differences in time zones can limit participation, while language barriers may reduce opportunities for active discussion for participants who are not fluent in English. Furthermore, participating countries differ substantially regarding healthcare infrastructure, access to prenatal diagnosis, rehabilitation services, assistive technology, adult/geriatric services and workforce capacity. These contextual differences mean that successful initiatives cannot simply be transferred between settings but require local adaptation. This article is intended as a reflective narrative review of the collaborative and therefore presents illustrative examples rather than a comprehensive evaluation of all SBGLC activities or outcomes.

Future directions

Although the SBGLC has grown substantially since its establishment, several planned initiatives remain under development. A dedicated online landing page is under development to facilitate communication and resource sharing. Professional involvement from Asia and Australia is sought. Priorities include expanding participation from underrepresented regions and low-resource settings, strengthening structured mentorship, evaluating the educational impact of the collaborative and establishing sustainable funding. In addition, plans are underway to develop a summer school aimed at supporting the next generation of clinicians, researchers and advocates working in SB care.

Conclusion

The challenge in improving care for individuals living with SB globally often lies, not in technological limitations, but in the absence of sustained transnational collaboration that supports shared learning and the exchange of practice standards. By creating spaces where clinicians, researchers and advocates can openly exchange experiences and approaches, collaborative networks such as SBGLC help strengthen professional capacity and inspire locally adapted initiatives. Through the dissemination of knowledge and practical strategies, these partnerships also contribute to educating the next generation of clinicians, researchers and advocates committed to improving care for individuals with SB across the lifespan.