{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,16]],"date-time":"2026-10-16T06:21:29Z","timestamp":1792131689777,"version":"4.4.0"},"reference-count":23,"publisher":"MDPI AG","issue":"2","license":[{"start":{"date-parts":[[2026,6,16]],"date-time":"2026-06-16T00:00:00Z","timestamp":1781568000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100007737","name":"St. Jude Children's Research Hospital","doi-asserted-by":"publisher","award":["No Grant number"],"award-info":[{"award-number":["No Grant number"]}],"id":[{"id":"10.13039\/100007737","id-type":"DOI","asserted-by":"publisher"}]},{"award":["No Grant number"],"award-info":[{"award-number":["No Grant number"]}],"id":[{"id":"https:\/\/ror.org\/02r3e0967","id-type":"ROR","asserted-by":"publisher"}]},{"name":"Links Incorporated","award":["No Grant number"],"award-info":[{"award-number":["No Grant number"]}]},{"award":["No Grant number"],"award-info":[{"award-number":["No Grant number"]}],"id":[{"id":"https:\/\/ror.org\/04pg24b43","id-type":"ROR","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["IJNS"],"abstract":"<jats:p>In sub-Saharan Africa, where approximately 75% of newborns with sickle cell disease (SCD) are born, under-five mortality remains high, partly due to the absence of newborn screening (NBS) and delayed linkage to comprehensive care. We conducted a prospective, quasi-experimental study involving two sequential newborn screening cohorts at Aminu Kano Teaching Hospital (AKTH), Kano, Nigeria (December 2022\u2013December 2025), to evaluate the feasibility of integrating newborn screening (NBS) with early comprehensive SCD care and to identify barriers to enrollment before 3 months of age. Following an initial implementation period with suboptimal follow-up, a structured family-centered enrollment and communication strategy was introduced to improve early linkage to comprehensive care. During the pre-intervention period, 277 newborns were enrolled (33 with SCD and 244 without SCD [NSCD]), with early enrollment (\u22643 months) occurring in 46.5% overall, higher among SCD than NSCD infants (72.8% vs. 43.0%). Delayed enrollment (&gt;6 months) was more frequent among SCD infants. Following the implementation of family-centered communication strategies, 60 additional newborns were enrolled (16 SCD, 44 NSCD), and early enrollment increased to 91.7%. These findings demonstrate that low-cost, family-centered communication and tracking strategies can substantially improve early linkage to comprehensive SCD care following newborn screening in low-resource settings. Early enrollment is a critical step toward reducing morbidity and mortality among children with SCD in low-resource settings.<\/jats:p>","DOI":"10.3390\/ijns12020042","type":"journal-article","created":{"date-parts":[[2026,6,17]],"date-time":"2026-06-17T03:27:21Z","timestamp":1781666841000},"page":"42","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Implementation of a Prospective Birth Cohort for Newborn Screening and Early Linkage to Comprehensive Sickle Cell Disease Care in a Low-Resource Setting"],"prefix":"10.3390","volume":"12","author":[{"ORCID":"https:\/\/orcid.org\/0009-0005-0742-3123","authenticated-orcid":false,"given":"Umma A.","family":"Ibrahim","sequence":"first","affiliation":[{"name":"Department of Pediatrics, Bayero University\/Aminu Kano Teaching Hospital, Kano 700233, Nigeria"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Aisha B.","family":"Musa","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Aminu Kano Teaching Hospital, Kano 700233, Nigeria"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Oiza O.","family":"Aliu-Isah","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Bayero University\/Aminu Kano Teaching Hospital, Kano 700233, Nigeria"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hauwa A.","family":"Inuwa","sequence":"additional","affiliation":[{"name":"Department of Medicine, Aminu Kano Teaching Hospital, Kano 700233, Nigeria"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3984-9354","authenticated-orcid":false,"given":"Zubaida L.","family":"Farouk","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Bayero University\/Aminu Kano Teaching Hospital, Kano 700233, Nigeria"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Khadija","family":"Bulama","sequence":"additional","affiliation":[{"name":"ASPIRE Team, Aminu Kano Teaching Hospital, Kano 700233, Nigeria"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Aisha","family":"Mukaddas","sequence":"additional","affiliation":[{"name":"ASPIRE Team, Aminu Kano Teaching Hospital, Kano 700233, Nigeria"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Khadija","family":"Kamal","sequence":"additional","affiliation":[{"name":"ASPIRE Team, Aminu Kano Teaching Hospital, Kano 700233, Nigeria"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0005-0461-7993","authenticated-orcid":false,"given":"Rifkatu N.","family":"Auta","sequence":"additional","affiliation":[{"name":"ASPIRE Team, Aminu Kano Teaching Hospital, Kano 700233, Nigeria"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nafiu","family":"Hussaini","sequence":"additional","affiliation":[{"name":"Department of Mathematical Sciences, Bayero University, Kano 700233, Nigeria"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Aisha A.","family":"Galadanci","sequence":"additional","affiliation":[{"name":"Department of Hematology, Bayero University\/Aminu Kano Teaching Hospital, Kano 700233, Nigeria"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7871-7488","authenticated-orcid":false,"given":"Yusuf D.","family":"Jobbi","sequence":"additional","affiliation":[{"name":"Department of Hematology, Bayero University\/Aminu Kano Teaching Hospital\/Kano Independence Research Center Trust, Kano 700233, Nigeria"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9780-5507","authenticated-orcid":false,"given":"Bilya S.","family":"Musa","sequence":"additional","affiliation":[{"name":"Department of Administration, Aminu Kano Teaching Hospital, Kano 700233, Nigeria"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yvonne","family":"Carroll","sequence":"additional","affiliation":[{"name":"Department of Hematology, St. Jude Children\u2019s Research Hospital, Memphis, TN 38105, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1076-8518","authenticated-orcid":false,"given":"Lauren J.","family":"Klein","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, D. Brent Polk Division of Pediatric Gastroenterology, Hepatology, and Nutrition, Monroe Carell Jr. Children\u2019s Hospital at Vanderbilt, Nashville, TN 37232, USA"},{"name":"Vanderbilt Institute for Global Health, Vanderbilt University Medical Center, Nashville, TN 37232, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8363-3094","authenticated-orcid":false,"given":"Ibrahim M.","family":"Idris","sequence":"additional","affiliation":[{"name":"Department of Hematology, Bayero University\/Aminu Kano Teaching Hospital, Kano 700233, Nigeria"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0574-1604","authenticated-orcid":false,"given":"Michael R.","family":"DeBaun","sequence":"additional","affiliation":[{"name":"Vanderbilt Institute for Global Health, Vanderbilt University Medical Center, Nashville, TN 37232, USA"},{"name":"Department of Pediatrics, Vanderbilt-Meharry Center of Excellence in Sickle Cell Disease, Vanderbilt University Medical Center, Nashville, TN 37232, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9504-4679","authenticated-orcid":false,"given":"Muktar H.","family":"Aliyu","sequence":"additional","affiliation":[{"name":"Vanderbilt Institute for Global Health, Vanderbilt University Medical Center, Nashville, TN 37232, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2026,6,16]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"S398","DOI":"10.1016\/j.amepre.2011.09.013","article-title":"Sickle cell disease in Africa: A neglected cause of early childhood mortality","volume":"41","author":"Grosse","year":"2011","journal-title":"Am. J. Prev. Med."},{"key":"ref_2","doi-asserted-by":"crossref","first-page":"3447","DOI":"10.1182\/blood-2009-07-233700","article-title":"Improved survival of children and adolescents with sickle cell disease","volume":"115","author":"Quinn","year":"2010","journal-title":"Blood"},{"key":"ref_3","doi-asserted-by":"crossref","first-page":"e534","DOI":"10.1016\/S2352-3026(20)30143-5","article-title":"Implementing newborn screening for sickle cell disease as part of immunization programs in Nigeria: A feasibility study","volume":"7","author":"Nnodu","year":"2020","journal-title":"Lancet Haematol."},{"key":"ref_4","doi-asserted-by":"crossref","first-page":"905","DOI":"10.3324\/haematol.10937","article-title":"Clinical outcomes in children with sickle cell disease living in England: A neonatal cohort in East London","volume":"92","author":"Telfer","year":"2007","journal-title":"Haematologica"},{"key":"ref_5","doi-asserted-by":"crossref","first-page":"927","DOI":"10.1111\/bjh.14015","article-title":"Improvement of medical care in a cohort of newborns with sickle-cell disease in North Paris: Impact of national guidelines","volume":"173","author":"Couque","year":"2016","journal-title":"Br. J. Haematol."},{"key":"ref_6","doi-asserted-by":"crossref","unstructured":"Piel, F.B., Hay, S.I., Gupta, S., Weatherall, D.J., and Williams, T.N. (2013). Global burden of sickle cell anaemia in children under five, 2010\u20132050. PLoS Med., 10.","DOI":"10.1371\/journal.pmed.1001484"},{"key":"ref_7","unstructured":"(2023). GBD 2021 Sickle Cell Disease Collaborators. Global, regional, and national prevalence and mortality burden of sickle cell disease, 2000\u20132021. Lancet Haematol., 10, e585\u2013e599."},{"key":"ref_8","doi-asserted-by":"crossref","first-page":"161","DOI":"10.1080\/00034983.1979.11687243","article-title":"Abnormal haemoglobins in the Sudan savanna of Nigeria","volume":"73","author":"Fleming","year":"1979","journal-title":"Ann. Trop. Med. Parasitol."},{"key":"ref_9","doi-asserted-by":"crossref","first-page":"520","DOI":"10.1182\/blood-2024-203142","article-title":"Building capacity in sub-Saharan Africa to address sickle cell disease: The CONSA initiative","volume":"144","author":"Kiyaga","year":"2024","journal-title":"Blood"},{"key":"ref_10","doi-asserted-by":"crossref","unstructured":"Shook, L.M., and Ware, R.E. (2026). Advances and gaps in global newborn screening for sickle cell disease. Int. J. Neonatal Screen., 12.","DOI":"10.3390\/ijns12010004"},{"key":"ref_11","doi-asserted-by":"crossref","unstructured":"Paintsil, V., Amuzu, E.X., Nyanor, I., Asafo-Adjei, E., Mohammed, A.R., Yawnumah, S.A., Oppong-Mensah, Y.G., Nguah, S.B., Obeng, P., and Dogbe, E.E. (2022). Establishing a Sickle Cell Disease Registry in Africa: Experience from the Sickle Pan-African Research Consortium, Kumasi, Ghana. Front. Genet., 13.","DOI":"10.3389\/fgene.2022.802355"},{"key":"ref_12","doi-asserted-by":"crossref","first-page":"e70044","DOI":"10.1002\/jha2.70044","article-title":"Sickle Cell Disease in Africa: SickleInAfrica Registry in Ghana, Nigeria, and Tanzania","volume":"6","author":"Morrice","year":"2025","journal-title":"EJHaem"},{"key":"ref_13","unstructured":"The Nation (2026, March 18). 831,000 patients attended AKTH in one year, says report, The Nation Newspaper, Available online: https:\/\/thenationonlineng.net\/831000-patients-attended-akth-in-one-year-says-report\/."},{"key":"ref_14","doi-asserted-by":"crossref","first-page":"984","DOI":"10.1002\/ajh.23578","article-title":"A prospective newborn screening and treatment program for sickle cell anemia in Angola","volume":"88","author":"McGann","year":"2013","journal-title":"Am. J. Hematol."},{"key":"ref_15","doi-asserted-by":"crossref","first-page":"e1458","DOI":"10.1016\/S2214-109X(19)30328-6","article-title":"The epidemiology of sickle cell disease in children in Kilifi, Kenya","volume":"7","author":"Uyoga","year":"2019","journal-title":"Lancet Glob. Health"},{"key":"ref_16","doi-asserted-by":"crossref","first-page":"933","DOI":"10.1016\/j.puhe.2007.12.005","article-title":"Neonatal screening and care programs for sickle cell disorders in sub-Saharan Africa","volume":"122","author":"Tshilolo","year":"2008","journal-title":"Public Health"},{"key":"ref_17","doi-asserted-by":"crossref","first-page":"S120","DOI":"10.1542\/peds.2007-2022UUU","article-title":"Screening newborns for sickle cell disease in Ghana","volume":"121","author":"Oduro","year":"2008","journal-title":"Pediatrics"},{"key":"ref_18","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":"ref_19","doi-asserted-by":"crossref","unstructured":"Petigas, L., Seck, N., Doupa, D., Diagne, I., and Roth-Kleiner, M. (2025). Findings supporting neonatal screening for sickle cell disease in Senegal. Front. Pediatr., 13.","DOI":"10.3389\/fped.2025.1578570"},{"key":"ref_20","doi-asserted-by":"crossref","first-page":"129","DOI":"10.1080\/20469047.2021.1881270","article-title":"Blood transfusion and mortality in children with severe anaemia in a malaria-endemic region","volume":"41","author":"Keating","year":"2021","journal-title":"Paediatr. Int. Child Health"},{"key":"ref_21","doi-asserted-by":"crossref","first-page":"e1310","DOI":"10.1016\/S2214-109X(19)30364-X","article-title":"Sickle cell disease in Africa: Need for longitudinal studies","volume":"7","author":"Wonkam","year":"2019","journal-title":"Lancet Glob. Health"},{"key":"ref_22","doi-asserted-by":"crossref","first-page":"143","DOI":"10.1016\/j.tracli.2021.01.013","article-title":"Transfusion and sickle cell anemia in Africa","volume":"28","author":"Diop","year":"2021","journal-title":"Transfus. Clin. Biol."},{"key":"ref_23","doi-asserted-by":"crossref","unstructured":"Eleonore, N.L.E., Cumber, S.N., Charlotte, E.E., Lucas, E.E., Edgar, M.M.L., Nkfusai, C.N., Geh, M.M., Ngenge, B.M., Bede, F., and Fomukong, N.H. (2020). Malaria in patients with sickle cell anaemia: Burden, risk factors, and outcome at the Laquintinie Hospital, Cameroon. BMC Infect. Dis., 20.","DOI":"10.1186\/s12879-019-4757-x"}],"container-title":["International Journal of Neonatal Screening"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.mdpi.com\/2409-515X\/12\/2\/42\/pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,6,22]],"date-time":"2026-06-22T04:23:07Z","timestamp":1782102187000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.mdpi.com\/2409-515X\/12\/2\/42"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,6,16]]},"references-count":23,"journal-issue":{"issue":"2","published-online":{"date-parts":[[2026,6]]}},"alternative-id":["ijns12020042"],"URL":"https:\/\/doi.org\/10.3390\/ijns12020042","relation":{},"ISSN":["2409-515X"],"issn-type":[{"value":"2409-515X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,6,16]]}}}