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在非洲建设镰状细胞病研究能力:来自坦桑尼亚建立出生队列的经验教训与挑战。

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

作者信息

Nkya Siana, Njiro Belinda J, Ngowi Doreen, Solomon David, Kaywanger Frida, Nyangasa Salama, Ndoje Godfrey, Marco Emmanuela, Moses Mazoea, Makani Julie

机构信息

Department of Haematology and Blood Transfusion, Muhimbili University of Health and Allied Sciences, Dar es Salaam, Tanzania.

Biological Sciences, Dar es Salaam University College of Education, Dar es Salaam, Tanzania.

出版信息

Front Pediatr. 2022 Sep 9;10:826199. doi: 10.3389/fped.2022.826199. eCollection 2022.

DOI:10.3389/fped.2022.826199
PMID:36160767
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9500343/
Abstract

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.

摘要

镰状细胞病(SCD)是撒哈拉以南非洲(SSA)已知的公共卫生负担。SCD的症状始于儿童早期,如果管理不善可能导致过早死亡(5岁之前)。了解影响SCD早期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SCD出生队列,对其进行一段时间(3 - 5年)的跟踪,同时记录与儿童早期疾病相关的必要信息。迄今为止,非洲的SCD出生队列很少。为了填补这一空白,我们建立了一个有SCD和无SCD(有镰状细胞性状和健康婴儿)的出生队列。这些婴儿随访3年,其研究访视与免疫接种计划同步。在入组和随访期间,收集有关人口统计学、临床和实验室参数的信息。迄今为止,我们总共招募了341名有SCD和无SCD的婴儿。其中,分别有311名、186名、133名、81名、44名和16名婴儿返回进行了第1次、第2次、第3次、第4次、第5次和第6次访视。我们在入组时和随访期间收集了这些婴儿的人口统计学和临床信息。我们还利用这个平台了解在非洲背景下建立和维持研究出生队列的最佳方法。我们分析了与将出生队列与免疫接种平台整合相关的实际问题,这似乎是在我们的背景下维持出生队列最有效和可持续的策略。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/73bb/9500343/35ba96ba8e84/fped-10-826199-g0002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/73bb/9500343/53eef9716e5f/fped-10-826199-g0001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/73bb/9500343/35ba96ba8e84/fped-10-826199-g0002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/73bb/9500343/53eef9716e5f/fped-10-826199-g0001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/73bb/9500343/35ba96ba8e84/fped-10-826199-g0002.jpg

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PLoS One. 2020 Dec 3;15(12):e0242861. doi: 10.1371/journal.pone.0242861. eCollection 2020.
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Screening for sickle cell disease in newborns: a systematic review.新生儿镰状细胞病筛查:系统评价。
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Association between male involvement during antenatal care and use of maternal health services in Mwanza City, Northwestern Tanzania: a cross-sectional study.
非洲镰状细胞特征婚前筛查实践的最新进展:系统评价和荟萃分析。
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Managing gastrointestinal challenges: Diarrhea in sickle cell anemia.应对胃肠道挑战:镰状细胞贫血中的腹泻
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