拉丁美洲的光学神经炎谱系障碍:全球数据共享倡议
Juan I Rojas1, Liliana Patrucco2, Edgardo Cristiano2
1Centro de Esclerosis Múltiple de Buenos Aires (CEMBA), Argentina; MS Center, Hospital Universitario de CEMIC, Buenos Aires, Argentina.
Multiple sclerosis and related disorders
|April 23, 2025
概括
一项全球倡议收集了拉丁美洲神经髓炎光学谱系障碍 (NMOSD) 患者的数据. 大多数患者接受了治疗,但获得新疗法的机会仍然有限,突出了改善护理的需要.
科学领域:
- 神经学 神经学
- 流行病学 流行病学
- 医疗保健服务研究 医疗服务研究
背景情况:
- 神经omyelitis optica光谱障碍 (NMOSD) 是一种罕见的自身免疫性疾病,影响中枢神经系统.
- 了解拉丁美洲的治疗模式和治疗机会对于改善患者的治疗结果至关重要.
研究的目的:
- 为拉丁美洲 (LATAM) 的NMOSD患者建立全球数据共享倡议.
- 确定该地区未经治疗的NMOSD患者的频率.
- 为改善患者护理提供有针对性的准入和教育项目.
主要方法:
- 一个非干预性的,多中心的,横截面研究.
- 从16个LATAM国家的注册和观察队伍收集的数据.
- 从1264名NMOSD患者的同质化数据进入中央数据库.
主要成果:
- 拉美地区90.8%的NMOSD患者正在接受长期治疗.
- 9.2%的患者没有接受治疗.
- 利图西马布和阿扎西奥普林是最常见的治疗方法;新型疗法未得到充分利用 (<5%).
结论:
- 该研究提供了对拉丁美洲NMOSD治疗景观的关键见解.
- 确定需要改善对先进疗法的获取和教育.
- 支持制定有针对性的策略,以提高患者护理和长期结果.
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