{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,28]],"date-time":"2026-10-28T02:04:01Z","timestamp":1793153041160,"version":"4.5.0"},"reference-count":34,"publisher":"BMJ","issue":"3","license":[{"start":{"date-parts":[[2022,3,9]],"date-time":"2022-03-09T00:00:00Z","timestamp":1646784000000},"content-version":"unspecified","delay-in-days":8,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"DOI":"10.13039\/100000002","name":"National Institutes of Health","doi-asserted-by":"publisher","award":["K23-HL148548-01A1"],"award-info":[{"award-number":["K23-HL148548-01A1"]}],"id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100004336","name":"Novartis","doi-asserted-by":"publisher","award":["No funding award number."],"award-info":[{"award-number":["No funding award number."]}],"id":[{"id":"10.13039\/100004336","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000062","name":"National Institute of Diabetes and Digestive and Kidney Diseases","doi-asserted-by":"publisher","award":["1K08DK123389-01A1"],"award-info":[{"award-number":["1K08DK123389-01A1"]}],"id":[{"id":"10.13039\/100000062","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["BMJ Open"],"accepted":{"date-parts":[[2022,2,8]]},"published-print":{"date-parts":[[2022,3]]},"abstract":"<jats:sec>\n                    <jats:title>Objectives<\/jats:title>\n                    <jats:p>Given the fundamental role of newborn bloodspot screening (NBS) to enable prompt diagnosis and optimal clinical management of individuals with sickle cell disease (SCD), we sought to systematically assess enablers and barriers to implementation of NBS programmes for SCD in Africa using established qualitative research methods.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Setting<\/jats:title>\n                    <jats:p>Childbirth centres and NBS laboratories from six countries in East, West and Southern Africa.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Participants<\/jats:title>\n                    <jats:p>Eight programme leaders involved with establishing and operating NBS programmes for SCD in Angola, Democratic Republic of Congo, Ghana, Liberia, Nigeria and Tanzania.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Primary and secondary outcome measures<\/jats:title>\n                    <jats:p>Data obtained through a structured, phased interview approach were analysed using a combination of inductive and deductive codes and used to determine primary themes related to the implementation and sustainability of SCD NBS programmes.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Four primary themes emerged from the analysis relating to governance (eg, pragmatic considerations when deploying overcommitted clinical staff to perform NBS), technical (eg, design and execution of operational processes), cultural (eg, variability of knowledge and perceptions of community-based staff) and financial (eg, issues that can arise when external funding may effectively preclude government inputs) aspects. Key learnings included perceived factors that contribute to long-term NBS programme sustainability.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>The establishment of enduring NBS programmes is a proven approach to improving the health of populations with SCD. Organising such programmes in Africa is feasible, but initial implementation does not assure sustainability. Our analysis suggests that future programmes should prioritise government partner participation and funding from the earliest stages of programme development.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1136\/bmjopen-2021-057623","type":"journal-article","created":{"date-parts":[[2022,3,9]],"date-time":"2022-03-09T11:24:15Z","timestamp":1646825055000},"page":"e057623","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":40,"title":["Enablers and barriers to newborn screening for sickle cell disease in Africa: results from a qualitative study involving programmes in six countries"],"prefix":"10.1136","volume":"12","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-6460-5872","authenticated-orcid":false,"given":"Natasha M","family":"Archer","sequence":"first","affiliation":[{"name":"Division of Hematology\/Oncology, Dana-Farber\/Boston Children\u2019s Cancer and Blood Disorders Center, Boston, Massachusetts, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Baba","family":"Inusa","sequence":"additional","affiliation":[{"name":"Evelina London Children\u2019s Hospital, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Julie","family":"Makani","sequence":"additional","affiliation":[{"name":"Muhimbili University of Health and Allied Sciences, Dar es Salaam, Tanzania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Siana","family":"Nkya","sequence":"additional","affiliation":[{"name":"Muhimbili University of Health and Allied Sciences, Dar es Salaam, Tanzania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"L\u00e9on","family":"Tshilolo","sequence":"additional","affiliation":[{"name":"Institut de Recherche Biom\u00e9dicale\/CEFA and Centre Hospitalier M\u00e8re\u2013Enfant Monkole, Kinshasa, Congo"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Venee N","family":"Tubman","sequence":"additional","affiliation":[{"name":"Texas Children\u2019s Cancer and Hematology Centers, Houston, Texas, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6198-4785","authenticated-orcid":false,"given":"Patrick T","family":"McGann","sequence":"additional","affiliation":[{"name":"Division of Hematology, Cincinnati Children\u2019s Hospital Medical Center, Cincinnati, Ohio, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Emmanuela Eusebio","family":"Ambrose","sequence":"additional","affiliation":[{"name":"Department of Paediatrics and Child Health, Bugando Medical Centre, Mwanza, Tanzania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Natalie","family":"Henrich","sequence":"additional","affiliation":[{"name":"Ariadne Labs, Harvard T.H. Chan School of Public Health, Boston, Massachusetts, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jonathan","family":"Spector","sequence":"additional","affiliation":[{"name":"Department of Global Health, Novartis Institutes for Biomedical Research, Cambridge, Massachusetts, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kwaku","family":"Ohene-Frempong","sequence":"additional","affiliation":[{"name":"Sickle Cell Foundation of Ghana, Accra, Ghana"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"239","published-online":{"date-parts":[[2022,3,9]]},"reference":[{"key":"2025121605402219000_12.3.e057623.1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2141.2011.08742.x"},{"key":"2025121605402219000_12.3.e057623.2","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pmed.1001484"},{"key":"2025121605402219000_12.3.e057623.3","doi-asserted-by":"publisher","DOI":"10.1126\/science.110.2865.543"},{"key":"2025121605402219000_12.3.e057623.4","doi-asserted-by":"crossref","first-page":"205","DOI":"10.1002\/ajh.25687","article-title":"Hemoglobin S polymerization and sickle cell disease: a retrospective on the occasion of the 70th anniversary of Pauling's science paper","volume":"95","author":"Eaton","year":"2020","journal-title":"Am J Hematol"},{"key":"2025121605402219000_12.3.e057623.5","doi-asserted-by":"crossref","first-page":"749","DOI":"10.1542\/peds.81.6.749","article-title":"Newborn screening for sickle cell disease: effect on mortality","volume":"81","author":"Vichinsky","year":"1988","journal-title":"Pediatrics"},{"key":"2025121605402219000_12.3.e057623.6","doi-asserted-by":"publisher","DOI":"10.1001\/jama.1987.03400090089040"},{"key":"2025121605402219000_12.3.e057623.7","doi-asserted-by":"publisher","DOI":"10.1056\/NEJM198606193142501"},{"key":"2025121605402219000_12.3.e057623.8","article-title":"Pneumococcal vaccines for sickle cell disease","author":"Davies","year":"2004","journal-title":"Cochrane Database Syst Rev"},{"key":"2025121605402219000_12.3.e057623.9","first-page":"1","article-title":"Newborn screening for sickle cell disease and other hemoglobinopathies","volume":"6","year":"1987","journal-title":"NIH Consensus Statement Online"},{"key":"2025121605402219000_12.3.e057623.10","doi-asserted-by":"publisher","DOI":"10.1182\/blood-2009-07-233700"},{"key":"2025121605402219000_12.3.e057623.11","doi-asserted-by":"crossref","first-page":"238","DOI":"10.1053\/j.semperi.2015.03.008","article-title":"Newborn screening for sickle cell diseases in the United States: a review of data spanning 2 decades","volume":"39","author":"Therrell","year":"2015","journal-title":"Semin Perinatol"},{"key":"2025121605402219000_12.3.e057623.12","doi-asserted-by":"crossref","first-page":"36","DOI":"10.3390\/ijns4040036","article-title":"Newborn screening for SCD in the USA and Canada","volume":"4","author":"El-Haj","year":"2018","journal-title":"Int J Neonatal Screen"},{"key":"2025121605402219000_12.3.e057623.13","doi-asserted-by":"crossref","first-page":"648","DOI":"10.1111\/bjh.15600","article-title":"Newborn screening for sickle cell disease in Europe: recommendations from a pan-European consensus conference","volume":"183","author":"Lobitz","year":"2018","journal-title":"Br J Haematol"},{"key":"2025121605402219000_12.3.e057623.14","doi-asserted-by":"crossref","first-page":"11","DOI":"10.3390\/ijns5010011","article-title":"The neonatal screening program in Brazil, focus on sickle cell disease (SCD)","volume":"5","author":"Silva-Pinto","year":"2019","journal-title":"Int J Neonatal Screen"},{"key":"2025121605402219000_12.3.e057623.15","doi-asserted-by":"crossref","first-page":"7","DOI":"10.3390\/ijns7010007","article-title":"Introduction of universal newborn screening for sickle cell disease in Germany-A brief narrative review","volume":"7","author":"Lobitz","year":"2021","journal-title":"Int J Neonatal Screen"},{"key":"2025121605402219000_12.3.e057623.16","doi-asserted-by":"publisher","DOI":"10.1053\/j.semperi.2009.12.006"},{"key":"2025121605402219000_12.3.e057623.17","doi-asserted-by":"publisher","DOI":"10.1111\/j.0141-9854.2003.00576.x"},{"key":"2025121605402219000_12.3.e057623.18","doi-asserted-by":"publisher","DOI":"10.1016\/S0022-3476(00)70102-8"},{"key":"2025121605402219000_12.3.e057623.19","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2007-2022UUU"},{"key":"2025121605402219000_12.3.e057623.20","doi-asserted-by":"publisher","DOI":"10.1002\/ajh.23578"},{"key":"2025121605402219000_12.3.e057623.21","doi-asserted-by":"crossref","first-page":"161","DOI":"10.1080\/00034983.1979.11687243","article-title":"Abnormal haemoglobins in the Sudan Savanna of Nigeria. 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