Spina bifida care, education, and research: A multidisciplinary community in a global context

被引:1
作者
Castillo, Jonathan [1 ,2 ]
Castillo, Heidi [1 ,2 ]
Thibadeau, Judy K. [3 ]
Brei, Tim [3 ,4 ,5 ]
机构
[1] Texas Childrens Hosp, Meyer Ctr Dev Pediat, Dept Pediat, Houston, TX USA
[2] Baylor Coll Med, Houston, TX 77030 USA
[3] Spina Bifida Assoc, Arlington, VA USA
[4] Seattle Childrens Hosp, Dept Pediat, Div Dev Med, Seattle, WA USA
[5] Univ Washington, Sch Med, Seattle, WA USA
关键词
Myelomeningocele; community-based participatory research; care coordination; minority health; health disparities; learning collaboratives; global health;
D O I
10.3233/PRM-219015
中图分类号
R72 [儿科学];
学科分类号
100202 ;
摘要
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.
引用
收藏
页码:569 / 570
页数:2
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