Sickle cell disease: Translating clinical care to low-resource countries through international research collaborations.
Sickle cell disease: Translating clinical care to low-resource countries through international research collaborations.
复制标题
镰状细胞病：通过国际研究合作将临床护理转移到资源匮乏的国家。
DOI：
10.1053/j.seminhematol.2018.04.010
复制
发表时间：
2018
影响因子：
3.6
通讯作者：
R. Ware
中科院分区：
文献类型：
--
作者：
L. Smart;Arielle G Hernandez;R. Ware
世界上绝大多数患有镰状细胞病（SCD）的儿童和成人出生在低资源环境中，特别是在撒哈拉以南非洲，加勒比地区，中东和印度。因此，许多成熟的、具有成本效益的和基于证据的用于管理SCD的策略，例如新生儿筛查、早期教育、疫苗接种、卒中预防筛查以及安全输血和羟基脲治疗，通常是不可用的，导致大量发病率和死亡率增加。高收入国家和这些低资源环境之间的合作（南北伙伴关系）一直在倡导，以改善临床护理为目标。根据世界卫生组织颁布的指令，我们制定了一项战略，开发前瞻性的研究计划，重点是培训，能力建设和当地数据收集。这一战略包括在项目启动前考虑重要的指导原则、全面的合作伙伴关系、适当的规划和财务问题，之后需要进行严格的项目管理，以实现全面的效果和长期的可持续性。最终，这些合作研究项目应该有助于制定国家指南，并改善所有患有SCD的儿童和成人的临床护理。
The vast majority of the world's population of children and adults with sickle cell disease (SCD) are born in low-resource settings, particularly in sub-Saharan Africa, the Caribbean, the Middle East, and India. As a result numerous well-established, cost-effective, and evidence-based strategies for managing SCD such as newborn screening, early education, vaccinations, screening for stroke prevention, and treatments with safe transfusions and hydroxyurea are often unavailable, leading to substantial morbidity and increased mortality. Collaborations between high-income countries and these low-resource settings (North-South partnerships) have been advocated, with the goal of improving clinical care. Based on directives promulgated by the World Health Organization, we have developed a strategy of developing prospective research programs that focus on training, capacity building, and local data collection. This strategy involves consideration of important guiding principles, full partnerships, proper planning, and financial issues before program launch, after which rigorous program management is required for full effect and long-term sustainability. Ultimately these collaborative research programs should help create national guidelines and lead to improved clinical care for all children and adults with SCD.