Meyer Center for Developmental Pediatrics, Department of Pediatrics, Texas Children's Hospital and the Baylor College of Medicine, Houston, TX, USA.
Spina Bifida Association, Arlington, VA, USA.
J Pediatr Rehabil Med. 2021;14(4):569-570. doi: 10.3233/PRM-219015.
Worldwide neural tube defects, such as encephalocele and spina bifida (SB), remain a substantial cause of the global burden of disease; and in the US, Latinos consistently have a higher birth prevalence of SB compared with other ethnic groups. From limited access and fragmented care, to scarcely available adult services, many are the challenges that besiege those living with SB. Thus, to provide inclusion and active involvement of parents of children and adults with SB from all communities, innovative approaches will be required, such as community-based participatory research and culturally competent learning collaboratives. Promisingly, the Spina Bifida Community-Centered Research Agenda was developed by the community of people living with SB through the Spina Bifida Association (SBA). Additionally, the SBA will host the Fourth World Congress on Spina Bifida Research and Care in March of 2023. Just as the SBA is clearly committed to this population, the Journal of Pediatric Rehabilitation Medicine will continue to serve as a catalyst for SB care, education, and research across the SB population in a global context.
全世界的神经管缺陷，如脑膨出和脊柱裂（SB），仍然是全球疾病负担的一个重要原因；在美国，与其他族裔群体相比，拉丁裔的 SB 出生率一直较高。从有限的获得途径和分散的护理，到几乎没有成人服务，许多是困扰 SB 患者的挑战。因此，为了让来自所有社区的 SB 患儿及其成年家长能够包容并积极参与，需要创新的方法，如基于社区的参与式研究和文化能力学习合作。有希望的是，通过脊柱裂协会（SBA），SB 患者群体制定了以社区为中心的脊柱裂研究议程。此外，SBA 将在 2023 年 3 月举办第四届世界脊柱裂研究和护理大会。正如 SBA 显然致力于这一人群一样，《儿科康复医学杂志》将继续在全球范围内为 SB 人群的护理、教育和研究提供催化剂。
