{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,4]],"date-time":"2026-05-04T09:50:32Z","timestamp":1777888232321,"version":"3.51.4"},"reference-count":7,"publisher":"SAGE Publications","issue":"4","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["PRM"],"published-print":{"date-parts":[[2021,12,23]]},"abstract":"<jats:p>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.<\/jats:p>","DOI":"10.3233\/prm-219015","type":"journal-article","created":{"date-parts":[[2021,12,3]],"date-time":"2021-12-03T11:00:03Z","timestamp":1638529203000},"page":"569-570","source":"Crossref","is-referenced-by-count":1,"title":["Spina bifida care, education, and research: A multidisciplinary community in a global context"],"prefix":"10.1177","volume":"14","author":[{"given":"Jonathan","family":"Castillo","sequence":"first","affiliation":[{"name":"Meyer Center for Developmental Pediatrics, Department of Pediatrics, Texas Children\u2019s Hospital and the Baylor College of Medicine, Houston, TX, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Heidi","family":"Castillo","sequence":"additional","affiliation":[{"name":"Meyer Center for Developmental Pediatrics, Department of Pediatrics, Texas Children\u2019s Hospital and the Baylor College of Medicine, Houston, TX, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Judy K.","family":"Thibadeau","sequence":"additional","affiliation":[{"name":"Spina Bifida Association, Arlington, VA, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Tim","family":"Brei","sequence":"additional","affiliation":[{"name":"Spina Bifida Association, Arlington, VA, USA"},{"name":"Department of Pediatrics, Division of Developmental Medicine, Seattle Children\u2019s Hospital and the University of Washington School of Medicine, Seattle, WA, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","reference":[{"key":"10.3233\/PRM-219015_ref1","doi-asserted-by":"publisher","first-page":"e803","DOI":"10.1016\/j.wneu.2021.01.096","article-title":"The Global Burden of Neural Tube Defects and Disparities in Neurosurgical Care","volume":"149","author":"Yacob","year":"2021","journal-title":"World Neurosurg"},{"issue":"2","key":"10.3233\/PRM-219015_ref2","doi-asserted-by":"publisher","first-page":"100883","DOI":"10.1016\/j.dhjo.2019.100883","article-title":"Philosophy of care delivery for spina bifida","volume":"13","author":"Thibadeau","year":"2020","journal-title":"Disabil Health J"},{"issue":"2","key":"10.3233\/PRM-219015_ref3","doi-asserted-by":"publisher","first-page":"100816","DOI":"10.1016\/j.dhjo.2019.06.005","article-title":"Scientific methodology of the development of the Guidelines for the Care of People with Spina Bifida: An initiative of the Spina Bifida Association","volume":"13","author":"Dicianno","year":"2020","journal-title":"Disabil Health J"},{"issue":"14","key":"10.3233\/PRM-219015_ref4","doi-asserted-by":"publisher","first-page":"947","DOI":"10.1002\/bdr2.1407","article-title":"The National Spina Bifida Patient Registry: A Decade\u2019s journey","volume":"111","author":"Castillo","year":"2019","journal-title":"Birth Defects Res"},{"issue":"1","key":"10.3233\/PRM-219015_ref5","first-page":"1","article-title":"Updated estimates of neural tube defects prevented by mandatory folic Acid fortification - United States, 1995\u20132011","volume":"64","author":"Williams","year":"2015","journal-title":"MMWR Morb Mortal Wkly Rep"},{"issue":"3-4","key":"10.3233\/PRM-219015_ref6","doi-asserted-by":"publisher","first-page":"167","DOI":"10.3233\/PRM-170471","article-title":"Global health and chronic non-communicable conditions: Spina bifida care across a worldwide community","volume":"10","author":"Castillo","year":"2017","journal-title":"J Pediatr Rehabil Med"},{"key":"10.3233\/PRM-219015_ref7","doi-asserted-by":"publisher","first-page":"1752","DOI":"10.1100\/tsw.2007.254","article-title":"The future of the multidisciplinary clinic","volume":"7","author":"Brei","year":"2007","journal-title":"ScientificWorld Journal"}],"container-title":["Journal of Pediatric Rehabilitation Medicine"],"original-title":[],"link":[{"URL":"https:\/\/content.iospress.com\/download?id=10.3233\/PRM-219015","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,5,1]],"date-time":"2026-05-01T04:39:56Z","timestamp":1777610396000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/full\/10.3233\/PRM-219015"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,12,23]]},"references-count":7,"journal-issue":{"issue":"4"},"URL":"https:\/\/doi.org\/10.3233\/prm-219015","relation":{},"ISSN":["1874-5393","1875-8894"],"issn-type":[{"value":"1874-5393","type":"print"},{"value":"1875-8894","type":"electronic"}],"subject":[],"published":{"date-parts":[[2021,12,23]]}}}