Jonathan Castillo, Judy K Thibadeau, Tim Brei, Heidi Castillo
{"title":"从产前护理到脊柱裂相关死亡率:在人的一生中,越来越多的移民和国际人口经历了各种转变。","authors":"Jonathan Castillo, Judy K Thibadeau, Tim Brei, Heidi Castillo","doi":"10.3233/PRM-239020","DOIUrl":null,"url":null,"abstract":"<p><p>Whether it is for collaboration on folic acid fortification or the standardization of care efforts concerning neurogenic bowel dysfunction, a global forum on neural tube defects related issues is needed. Propitiously, the 2023 Spina Bifida World Congress sponsored by the Spina Bifida Association (SBA) was a catalyst for transnational dialog in the field of spina bifida (SB) research. Concurrently, the Journal of Pediatric Rehabilitation Medicine (JPRM) provides a platform for both international research as well as numerous clinical and educational projects, such as The Lifespan Bowel Management Protocol, and social interventions taught through the American Academy of Pediatrics' Spina Bifida Transition ECHO. Through this open access issue, work by colleagues in Ethiopia, the Nordic countries, and Switzerland, as well as among other transnational populations is highlighted. The development of the Spina Bifida Global Learning Collaborative is also showcased, representing a training initiative across four continents. Correspondingly in this issue, JPRM published an update to the Transition Guidelines for the Care of People with Spina Bifida. The clinical guidelines are a product of the SBA Collaborative Care Network cooperative agreement with the National Center on Birth Defects and Developmental Disabilities in the Centers for Disease Control and Prevention. While colleagues across the globe remain committed to native, immigrant, and displaced populations of individuals affected by SB, JPRM will continue to distribute premier research in multidisciplinary care, education, and advocacy.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"16 4","pages":"581-582"},"PeriodicalIF":0.8000,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10789342/pdf/","citationCount":"0","resultStr":"{\"title\":\"From prenatal care to spina bifida related mortality: The lifespan is marked by transitions experienced by increasing immigrant and international populations.\",\"authors\":\"Jonathan Castillo, Judy K Thibadeau, Tim Brei, Heidi Castillo\",\"doi\":\"10.3233/PRM-239020\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p>Whether it is for collaboration on folic acid fortification or the standardization of care efforts concerning neurogenic bowel dysfunction, a global forum on neural tube defects related issues is needed. Propitiously, the 2023 Spina Bifida World Congress sponsored by the Spina Bifida Association (SBA) was a catalyst for transnational dialog in the field of spina bifida (SB) research. Concurrently, the Journal of Pediatric Rehabilitation Medicine (JPRM) provides a platform for both international research as well as numerous clinical and educational projects, such as The Lifespan Bowel Management Protocol, and social interventions taught through the American Academy of Pediatrics' Spina Bifida Transition ECHO. Through this open access issue, work by colleagues in Ethiopia, the Nordic countries, and Switzerland, as well as among other transnational populations is highlighted. The development of the Spina Bifida Global Learning Collaborative is also showcased, representing a training initiative across four continents. Correspondingly in this issue, JPRM published an update to the Transition Guidelines for the Care of People with Spina Bifida. The clinical guidelines are a product of the SBA Collaborative Care Network cooperative agreement with the National Center on Birth Defects and Developmental Disabilities in the Centers for Disease Control and Prevention. While colleagues across the globe remain committed to native, immigrant, and displaced populations of individuals affected by SB, JPRM will continue to distribute premier research in multidisciplinary care, education, and advocacy.</p>\",\"PeriodicalId\":16692,\"journal\":{\"name\":\"Journal of pediatric rehabilitation medicine\",\"volume\":\"16 4\",\"pages\":\"581-582\"},\"PeriodicalIF\":0.8000,\"publicationDate\":\"2023-01-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10789342/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of pediatric rehabilitation medicine\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.3233/PRM-239020\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q4\",\"JCRName\":\"PEDIATRICS\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of pediatric rehabilitation medicine","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.3233/PRM-239020","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q4","JCRName":"PEDIATRICS","Score":null,"Total":0}
引用次数: 0
摘要
无论是叶酸强化方面的合作,还是有关神经源性肠功能障碍的标准化护理工作,都需要一个有关神经管缺陷相关问题的全球论坛。由脊柱裂协会(SBA)主办的 2023 年脊柱裂世界大会是脊柱裂(SB)研究领域跨国对话的催化剂。与此同时,《儿科康复医学杂志》(JPRM)也为国际研究以及众多临床和教育项目提供了平台,如《终生肠道管理协议》(The Lifespan Bowel Management Protocol),以及通过美国儿科学会脊柱裂过渡ECHO教授的社会干预措施。通过本期开放获取期刊,我们重点介绍了埃塞俄比亚、北欧国家、瑞士以及其他跨国人群的同事们所做的工作。本期还展示了脊柱裂全球学习合作组织的发展情况,这是一项横跨四大洲的培训计划。与此同时,《脊柱裂杂志》在本期发表了《脊柱裂患者护理过渡指南》的更新版。该临床指南是脊柱裂协作护理网络与美国疾病控制和预防中心的国家出生缺陷和发育障碍中心(National Center on Birth Defects and Developmental Disabilities)合作协议的产物。在全球各地的同仁继续致力于为受脊柱裂影响的本地、移民和流离失所人群提供服务的同时,JPRM 将继续在多学科护理、教育和宣传方面开展一流的研究。
From prenatal care to spina bifida related mortality: The lifespan is marked by transitions experienced by increasing immigrant and international populations.
Whether it is for collaboration on folic acid fortification or the standardization of care efforts concerning neurogenic bowel dysfunction, a global forum on neural tube defects related issues is needed. Propitiously, the 2023 Spina Bifida World Congress sponsored by the Spina Bifida Association (SBA) was a catalyst for transnational dialog in the field of spina bifida (SB) research. Concurrently, the Journal of Pediatric Rehabilitation Medicine (JPRM) provides a platform for both international research as well as numerous clinical and educational projects, such as The Lifespan Bowel Management Protocol, and social interventions taught through the American Academy of Pediatrics' Spina Bifida Transition ECHO. Through this open access issue, work by colleagues in Ethiopia, the Nordic countries, and Switzerland, as well as among other transnational populations is highlighted. The development of the Spina Bifida Global Learning Collaborative is also showcased, representing a training initiative across four continents. Correspondingly in this issue, JPRM published an update to the Transition Guidelines for the Care of People with Spina Bifida. The clinical guidelines are a product of the SBA Collaborative Care Network cooperative agreement with the National Center on Birth Defects and Developmental Disabilities in the Centers for Disease Control and Prevention. While colleagues across the globe remain committed to native, immigrant, and displaced populations of individuals affected by SB, JPRM will continue to distribute premier research in multidisciplinary care, education, and advocacy.