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资源有限环境下的多发性硬化症:不平等世界中的研究机遇。

Multiple sclerosis in resource-limited settings: Research opportunities in an unequal world.

机构信息

From the Department of Neurology, Massachusetts General Hospital; and Harvard Medical School, Boston, MA.

出版信息

Neurology. 2019 Jul 23;93(4):176-180. doi: 10.1212/WNL.0000000000007837.

Abstract

This position piece is meant to extend the humanitarian argument for assisting people with multiple sclerosis (MS) in resource-limited settings, in this case, through research. It is also meant to highlight areas of strength of some low- and middle-income countries (LMICs), and therefore emphasize how the field of MS could best be served globally by more research with and for resource-limited populations. Possible areas of particular strength include (1) ethnicity, genetic diversity, and migration studies; (2) analysis of possibly emerging environmental and lifestyle-related risk factors; (3) understanding the immune system when exposed to novel pathogens and various infectious agents; (4) reverse innovation to promote better point-of-care diagnostic tests; (5) high participation rates in clinical registries and research; (6) appreciation of MS in special populations including a higher focus on pediatrics and pregnancy; (7) culturally adept means of treatment and rehabilitating disability; (8) models of care delivery for chronic, complex neurologic diseases; and (9) use of off-label, generic, and less commonly implemented disease-modifying therapy sequences. Strategies for strengthening the MS research landscape include (1) creation of centers of research excellence in LMICs and twinning of institutions between high- and low-income countries; (2) standardization of research procedures and reduction of bureaucracies; (3) consensus meetings and network building; (4) opening additional avenues for publications and expanding the types of available publications; (5) identifying and establishing dedicated funding mechanisms; (6) focus on local relevance; and (7) setting expectations to include patients from LMICs in international clinical trials. These underutilized opportunities build an argument that global partnerships for research and knowledge coordination could better reach across populations, geographies, economies, and expertise.

摘要

这篇观点文章旨在从人道主义角度为资源有限环境下的多发性硬化症(MS)患者提供支持,具体来说,就是通过研究提供支持。这也突出了一些低收入和中等收入国家(LMICs)的优势领域,并强调了通过针对资源有限人群开展更多研究,MS 领域如何才能在全球得到最好的服务。可能具有特别优势的领域包括:(1)种族、遗传多样性和迁移研究;(2)分析可能出现的新环境和与生活方式相关的风险因素;(3)了解免疫系统在接触新病原体和各种传染性病原体时的反应;(4)反向创新以促进更好的即时护理诊断测试;(5)在临床登记处和研究中高参与率;(6)特别关注儿科和妊娠等特殊人群中的 MS;(7)针对残疾患者采用文化适宜的治疗和康复方法;(8)为慢性、复杂神经疾病提供护理模式;(9)使用非专利、通用和不太常用的疾病修正治疗方案。加强 MS 研究领域的策略包括:(1)在 LMICs 建立研究卓越中心,并在高收入和低收入国家的机构之间建立结对关系;(2)标准化研究程序并减少官僚主义;(3)召开共识会议并建立网络;(4)为出版物开辟更多途径,并扩大可用出版物的类型;(5)确定并建立专门的供资机制;(6)关注当地相关性;(7)设定期望,包括让来自 LMICs 的患者参与国际临床试验。这些未充分利用的机会表明,全球研究和知识协调伙伴关系可以更好地覆盖人群、地理、经济和专业知识。

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