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

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...

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Autores principales: Nkya, Siana, Njiro, Belinda J., Ngowi, Doreen, Solomon, David, Kaywanger, Frida, Nyangasa, Salama, Ndoje, Godfrey, Marco, Emmanuela, Moses, Mazoea, Makani, Julie
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9500343/
https://www.ncbi.nlm.nih.gov/pubmed/36160767
http://dx.doi.org/10.3389/fped.2022.826199
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author Nkya, Siana
Njiro, Belinda J.
Ngowi, Doreen
Solomon, David
Kaywanger, Frida
Nyangasa, Salama
Ndoje, Godfrey
Marco, Emmanuela
Moses, Mazoea
Makani, Julie
author_facet Nkya, Siana
Njiro, Belinda J.
Ngowi, Doreen
Solomon, David
Kaywanger, Frida
Nyangasa, Salama
Ndoje, Godfrey
Marco, Emmanuela
Moses, Mazoea
Makani, Julie
author_sort Nkya, Siana
collection PubMed
description 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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spelling pubmed-95003432022-09-24 Building research capacity for sickle cell disease in Africa: Lessons and challenges from establishing a birth cohort in Tanzania Nkya, Siana Njiro, Belinda J. Ngowi, Doreen Solomon, David Kaywanger, Frida Nyangasa, Salama Ndoje, Godfrey Marco, Emmanuela Moses, Mazoea Makani, Julie Front Pediatr Pediatrics 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. Frontiers Media S.A. 2022-09-09 /pmc/articles/PMC9500343/ /pubmed/36160767 http://dx.doi.org/10.3389/fped.2022.826199 Text en Copyright © 2022 Nkya, Njiro, Ngowi, Solomon, Kaywanger, Nyangasa, Ndoje, Marco, Moses and Makani. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Pediatrics
Nkya, Siana
Njiro, Belinda J.
Ngowi, Doreen
Solomon, David
Kaywanger, Frida
Nyangasa, Salama
Ndoje, Godfrey
Marco, Emmanuela
Moses, Mazoea
Makani, Julie
Building research capacity for sickle cell disease in Africa: Lessons and challenges from establishing a birth cohort in Tanzania
title Building research capacity for sickle cell disease in Africa: Lessons and challenges from establishing a birth cohort in Tanzania
title_full Building research capacity for sickle cell disease in Africa: Lessons and challenges from establishing a birth cohort in Tanzania
title_fullStr Building research capacity for sickle cell disease in Africa: Lessons and challenges from establishing a birth cohort in Tanzania
title_full_unstemmed Building research capacity for sickle cell disease in Africa: Lessons and challenges from establishing a birth cohort in Tanzania
title_short Building research capacity for sickle cell disease in Africa: Lessons and challenges from establishing a birth cohort in Tanzania
title_sort building research capacity for sickle cell disease in africa: lessons and challenges from establishing a birth cohort in tanzania
topic Pediatrics
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9500343/
https://www.ncbi.nlm.nih.gov/pubmed/36160767
http://dx.doi.org/10.3389/fped.2022.826199
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