Building research capacity for sickle cell disease in Africa: Lessons and challenges from establishing a birth cohort in Tanzania.

Building research capacity for sickle cell disease in Africa: Lessons and challenges from establishing a birth cohort in Tanzania.
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DOI:
10.3389/fped.2022.826199
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发表时间:
2022
影响因子:
2.6
通讯作者:
--
中科院分区:
医学3区
文献类型:
--
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镰状细胞病 (SCD) 是撒哈拉以南非洲 (SSA) 地区已知的公共卫生负担。 SCD 的表现始于儿童早期,如果处理不当可能会导致过早死亡(5 岁之前)。了解影响早期 SCD 表现的潜在机制对于早期疾病和干预管理非常重要,这反过来又会降低儿童的发病率和死亡率。实现这一目标的一种方法是建立可跟踪一段时间(3-5 年)的 SCD 出生队列,同时记录与幼儿疾病相关的必要信息。迄今为止,非洲的 SCD 出生队列很少。为了解决这一差距,我们建立了患有和不患有 SCD 的婴儿(具有镰状细胞特征和健康婴儿)的出生队列。这些婴儿将接受为期 3 年的随访,其研究访问与免疫接种计划同步。在登记和随访期间,收集有关人口统计、临床和实验室参数的信息。迄今为止,我们已总共招募了 341 名患有和未患有 SCD 的婴儿。其中,分别有 311、186、133、81、44 和 16 名婴儿回国进行第一次、第二次、第三次、第四次、第五次和第六次就诊。我们在入组和随访期间收集了这些婴儿的人口统计和临床信息。我们还利用这个平台来学习在非洲背景下建立和维持研究出生队列的最佳方法。我们分析了有关出生队列与免疫平台整合的实际问题,这似乎是在我们的背景下维持出生队列的最有效和可持续的策略。
Sickle Cell Disease (SCD) is a known public health burden in sub-Saharan Africa (SSA). The manifestation of SCD starts in early childhood and if not well-managed may lead to early death (before the age of 5 years). Understanding the underlying mechanisms that influence early SCD manifestation is of great importance for early disease and intervention management which will in turn, reduce both morbidity and mortality rates in children. One approach of achieving this is by establishing SCD birth cohorts that can be followed for a period of time (3–5 years) whilst documenting necessary information related to early childhood illnesses. To date, there are few SCD birth cohorts in Africa. To address this gap, we have established a birth cohort of babies with and without SCD (with sickle cell trait and healthy babies). These babies are followed up for 3 years with their study visits synchronized to the immunization schedule. During enrollment and follow-up visits, information on demographic, clinical, and laboratory parameters are collected. To date, we have enrolled a total of 341 babies with and without SCD. Out of these, a total of 311, 186, 133, 81, 44, and 16 babies have returned for their 1st, 2nd, 3rd, 4th, 5th, and 6th visits, respectively. We have collected both demographic and clinical information for these babies at enrollment and during follow-up. We have also utilized this platform to learn on the best approaches of establishing and maintaining a research birth cohort in an African context. We have analyzed the practical issues pertaining to the integration of the birth cohort with the immunization platform which seems to be the most effective and sustainable strategy for maintaining a birth cohort in our context.
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发表时间: 2020
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