Integrating Sickle Cell Disease Care into Primary Health Care in the Democratic Republic of Congo: Lessons from a three-year Pilot project (2022-2024)

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In Primary Health Care, it's crucial to detect problems early and work collaboratively to solve them in order to minimize the number of people who get sick and die. Methods From 2022 to 2024, SANRU Asbl undertook a trial project in three selected health zones in the Democratic Republic of Congo (Selembao in Kinshasa province, Diulu Kasai Oriental province, and Ibanda in Sud Kivu province) with support from the Pierre Fabre Foundation to integrate Sscke cell disease services into Primary health care. Interventions included creating national standards, screening pregnant women and newborns, using the Gazelle automate to validate laboratory results through electrophoresis, making it easier for people to get important medicines, improving blood collection systems, educating individuals in the community with the help of peer educators, and ongoing supervision. We collected the information from reports on community activities, lab records, and normal health records. Results In the pilot study, 30,665 pregnant women, 12,252 neonates, and 13,536 children with symptoms underwent electrophoretic profiling, which allowed the early diagnosis of Sickle cell disease. Community involvement increased awareness, reduced stigma, and enhanced the likelihood of individuals seeking care. The project helped build up a network of labs for confirmatory testing and made sure that medicines were on hand. Nonetheless, challenges persisted regarding the maintenance of a consistent supply, employee turnover, and the referencing system. Conclusion This pilot shows that integrating Sickle Cell disease services into Primary health care is possible and helpful. It makes it easier to get diagnosis and treatment, gets more people involved in the community, and teaches principles for expanding nationwide in the Democratic republic of Congo and places like it. Sickle cell disease Primary health care Integration of services Newborn screening Democratic Republic of Congo Introduction Sickle cell disease (SCD) represents a prevalent inherited haematological disorder globally. This constitutes a significant public health issue in sub-Saharan Africa (SSA). Annually, over 300,000 infants are born with sickle cell disease, with approximately 75% of these cases occurring in Africa. 1 Children affected by this condition often do not survive past the age of five without timely diagnosis and treatment. In the Democratic Republic of Congo(DRC), the prevalence of sickle cell trait ranges from 20% to 30%, with 40,000 infants affected annually. 2 Sickle Cell Disease (SCD) represents a significant public health challenge; however, it has often been overlooked in comparison to other pressing issues such as HIV, tuberculosis, and malaria. In the DRC, specialized sickle cell disease services are available solely in tertiary hospitals and urban areas. This indicates that most patients are unable to receive timely diagnosis, preventive care, or treatment. Problems with the system, like weak supply chains for drugs and tests, insufficient integration with the national health information system, and not enough training for primary care health workers, make this inequity even worse. Also, stigma and a lack of community awareness make it even less likely that people would use the program, which leads to a cycle of late diagnosis and problems that could have been prevented. Recently, the World Health Organization (WHO) and regional initiatives have promoted comprehensive strategies to integrate SCD into primary health care (PHC) and national health policies, situating this approach within the broader movement towards universal health coverage (UHC). 3 Evidence from countries such as Nigeria and Ghana suggests that decentralized, community-focused SCD interventions could significantly reduce morbidity and mortality while improving equity in healthcare access. 4 Recognizing this necessity, the Ministry of Health (MOH) of the DRC, with the support of the PFF, initiated a three-year pilot project (2022–2024) to integrate SCD services into primary healthcare in three health zones (Selembao Kinshasa province, Diulu in Kasai Central province, and Ibanda in Sud Kivu province). Standardized tools, routine prenatal and postpartum screening, electrophoresis to confirm results, facilitating access to essential medications, and community engagement through peer educators were all part of the solution. The pilot project sought not only to provide services but also to enhance monitoring at the district level, integrate data into the national health information system (NHI), and advocate for increased prioritization of SCD at both national and provincial levels. This study aims to analyze the implementation of the pilot project, highlighting its successes, failures, and the lessons learnt from the experience. This initiative aims to contribute to the ongoing discourse on integrating SCD care into primary health care in low-resource settings and to assist policymakers in making informed decisions regarding future national scale up. Methods Study design and setting This was a descriptive programmatic evaluation of a pilot project implemented over three years. The intervention was carried out in three health zones—Selembao (Kinshasa), Diulu (Mbuji-Mayi), and Ibanda (Bukavu) covering more than 40 health areas. These HZ represent both urban and peri-urban settings, providing diverse contexts for integration. Intervention components The pilot focused on multiple synergistic components. The MOH established normative tools, including national guidelines, patient files, and monthly reporting templates for SCD. Systematic screening has been performed in antenatal care (ANC), using electrophoresis to evaluate haemoglobin profiles in pregnant women. Hemotyp RDT was used for newborn screening, and Gazelle automate was used for electrophoresis validation. Children who showed symptoms, in conjunction with their fellow siblings, underwent testing. strengthening the supply chains for essential medications such as Penicillin, Folic acid, paracetamol, and pain management treatments has facilitated access to necessary medicines for individuals. Blood collection and transfusion systems have been enhanced due to their significance in addressing urgent issues. An important component of the intervention was community involvement. Peer educators, many of whom have sickle cell disease (SCD) themselves, conducted initiatives to enhance knowledge, dispel misconceptions, and reduce stigma among communities. To ensure the effective implementation of the program, PHC officials conducted frequent monitoring and capacity-building sessions. Ultimately, the campaign succeeded in elevating SCD to a public health priority at both national and regional levels. One method used was conducting a multi-national workshop in Kinshasa. Collecting and analyzing data Data was collected from standard health information systems, laboratory logs, and community activity reports. Descriptive analyses were conducted to summarize service utilization, laboratory results, and community engagement outcomes. Ethics approval and consent to participate This study was conducted in accordance with the ethical principles outlined in the Declaration of Helsinki and national guidelines for research involving human participants in the Democratic Republic of Congo. Ethical approval for the pilot project and the use of programmatic data for research purposes was obtained from the Institutional ethics committee of the protestant university of Congo (ref: CEUPC0231). The project was implemented in collaboration with the National program against Sicke cell disease (NPASCD) and local health authorities in the participating HZ (Selembao, Diulu, and Ibanda). All participants involved in community engagement activities, including peer educators and families receiving screening services, were informed about the objectives of the project and their participation was voluntary. Data collected from health facility records, laboratory registers, and community activity reports were anonymized and de-identified prior to analysis to ensure participant confidentiality and privacy. No personal identifiers were included in the dataset used for this analysis. Results Service uptake and early detection Over a three-year period, 30,665 pregnant women were evaluated during antenatal consultations (Table 1), facilitating early counselling and, when required, partner testing. Table1. Adherence to screening tests and distribution of hemoglobin variants among pregnant women. Variables n Number % [IC95%] Total women consulted 43572 Adhering to the screening test 30665 70,4 [67,1-72,4] No Adhering to the screening test 12907 29,6 [27,8-31,1] Haemoglobin type 30665 AA 27277 88,95 [86,32-90,62] AS 3217 10,49 [7,76-13,15] AC 74 0,24 [0,11-0,27] SS 98 0,32 [0,21-0,39] Newborns at risk were screened in maternity wards (Table 2), which was a keyway to find out about problems early on. Electrophoresis using Gazelle automate was used to confirm positive cases. Children who had not been screened at the maternity ward were identified during the first postnatal consultation or at the first preschool consultation. Table2. Uptake of screening tests and distribution of hemoglobin variants in newborns Variable n Number % [IC95%] Number of births 14510 Number of newborns tested 12252 84,4 [82,4-86,7] Number of newborns no tested 2258 15,6 [12,3-17,5] Newborns at risk hemoglobin type 3217 AA 2584 80,32 [78,19-82,7] AS 587 18,25 [17,5-20,6] AC 1 0,02 [0,01-0,04] SS 45 1,41 [1,11-1,67] Including symptomatic children and their siblings (Table 3) enabled family-based case detection, hence broadening the intervention's scope. Table3. Screening uptake and prevalence of hemoglobin variants in symptomatic children and their siblings Variable n Effectif % [IC95%] Total number of children received 13610 Tested 13536 99,5 [98,1-100,0] No tested 74 0,5 [0,2-0,7] Hemoglobin type 13536 AA 10746 79,39 [77,32-81,02] AS 1936 14,30 [12,11-15,49] AC 13 0,10 [0,02-0,27] SS 808 5,97 [5,13-6,71] Health system strengthening DRC has implemented a statewide SCD control program since 2003. Its function is to advocate for and lead the fight against disease nationwide. The program, like the disease, lacks sufficient funding to adequately support the response. The pilot initiative to integrate SCD management into PHC enabled the revision and formulation of normative documents outlining the key strategic and operational approaches for SCD control, including the national strategic plan and the national treatment protocol. At the operational level, the project established an automated electrophoresis network across all the HZ implemented. This innovative concept reduced the duration required for diagnosis and enhanced its accuracy. Essential medications were given more consistently; yet issues persisted regarding the assurance of uninterrupted availability. Additionally, safer blood collecting methods were implemented. Community dynamics Being involved in the community was essential. Peer educators were very helpful in spreading the information and getting families to get tested early. Their involvement also helped lessen the stigma of SCD, which made families and communities more welcoming. Civil society groups supported the advocacy agenda and made sure that the people in the area was involved. Policy influence The pilot helped people at the national level become more dedicated to SCD again. People from Cameroon, Central Africa, and Ivory Coast came to the Kinshasa workshop. It proved that the DRC is a leader in including genetic diseases in primary health care. At this level, discussions made people think about how to include SCD in national health programs. Challenges The project had a lot of issues, even though it was successful. The supply chains for essential medicines and laboratory reagents remained shaky, which put patient care in danger. It was challenging to keep things moving because there was a lot of staff turnover at PHC sites, which meant that workers had to be trained repeatedly. The referral systems for serious cases like acute chest syndrome or stroke didn't operate properly since the secondary and tertiary care facilities weren't good enough. The pilot couldn't grow beyond three health zones since it didn't have enough money. Discussion SCD services are more than merely started screening and treatment when they are added to PHC. It also needs to strengthen critical areas of the health care system. The pilot’s study showed that there was a huge difficulty with the supply chain. We had to organize and work closely with national pharmaceutical programs to make sure that penicillin and folic acid, prophylactic antibiotics, and laboratory reagents were always available. There were several stock-outs that revealed issues in the current supply chain. These stock-outs also showed how crucial it is to include SCD items in national supply planning, along with tuberculosis, HIV, and malaria. 3,5 To make sure that things last for a long time, it's vital to make buying and delivering things better. The district health management teams were very important for supervision. District officers were important for more than just reviewing the correctness of service data. They also trained primary care professionals and made sure that services were of high quality. Local ownership and the eventual institutionalization of SCD services at the facility level were made easier because they were close by and constantly ready to help. Similar conditions in Ghana and Nigeria indicate that robust leadership at the district level is essential for the integration of chronic disease care . 4,6 The pilot demonstrated the fragility of model’s dependent on transient donor funding in financial contexts. To ensure the sustainability of SCD services, encompassing medications, diagnostics, and community initiatives, they must be incorporated into the government's health budget and the necessary primary health care package. 7 saying that resilient health systems need money for cross-cutting tasks instead of disease-specific silos. This is in accordance with what they state. Adding SCD indicators to the national HIS was another important step forward. Using standardized templates to create monthly reports made it easier to keep an eye on indicators and improved how information flowed to central authorities. This experience shows that integrating SCD indicators into standard health information is feasible, hence enhancing the condition's visibility at the policy level. Lastly, the pilot highlights how crucial it is for people to be active in their communities. Peer educators and civil society organizations improved health-seeking behaviors, reduced stigma, and increased the demand for services. This bottom-up dynamic is in line with research that shows that community involvement is essential for successful primary health care programs. 3,5 This pilot experiment teaches us a lot. It has been demonstrated that SCD services can be integrated into PHC; nevertheless, for enduring effectiveness, systemic issues must be addressed. These include making the supply chain stronger, securing long-term funding, overseeing things at the district level, and integrating SCD services to HIS. These lessons are relevant not only to the DRC but also to other resource-limited countries seeking to improve SCD services within the context of universal health coverage (UHC). Integration of SCD services into primary care: feasibility and impact. The results of this pilot project demonstrate that the integration of SCD services into PHC in the DRC is not only feasible but also effective. The systematic screening of pregnant women (70.4% adherence) and newborns (84.4%) allowed for early detection, which is essential for reducing infant mortality related to SCD. These rates are comparable to those observed in similar initiatives in West and Central Africa, 8,9,10 confirming that integration into maternity, postnatal and prenatal consultation services is a key strategy for early detection. The community approach, through peer educators, has helped reduce stigmatization and improve the demand for care. This dynamic is consistent with the observations of Brito and Minja, 11,12 which highlight the importance of community partnerships for the sustainability of interventions. Moreover, the establishment of an automated electrophoresis network has improved diagnostic accuracy and reduced turnaround times, in line with the recommendations of Piel and Archer to strengthen local capacities. 13, 14 Comparison with international experiences . The results of our study align with the conclusions of pilot programs conducted in Nigeria, Ghana, and Mali, where neonatal screening and decentralized care have helped reduce morbidity and mortality related to SCD. 15,16,17 These experiences confirm that early detection, combined with antibiotic prophylaxis and community education, is an effective approach to improve the survival of children with SCD. Persistent challenges and implications for the healthcare system . Despite these successes, major challenges remain. The fragility of supply chains for essential medicines and laboratory reagents, high staff turnover, and inadequacies in referral systems for severe cases are obstacles also reported by Nnodu 8 and Guindo 16 .These constraints highlight the need to integrate SCD inputs into national supply plans and ensure recurrent public funding, in accordance with WHO recommendations for non-communicable diseases and the principles of UHC. 5,7 Sustainability and SCD indicators integration . The integration of SCD indicators into the HIS represents a major advancement, improving the visibility of the disease at the policy level. This approach is consistent with the recommendations of Kruk 7 for resilient systems and the conclusions of Nnodu 8 on the necessity of structured monitoring to ensure the sustainability of programs. The sustainability of interventions will also depend on the institutionalization of SCD services within the essential care package and their funding through the national health budget. Perspectives for national expansion For a sustainable national expansion, it is essential to consolidate political will, ensure recurrent public funding, and maintain community engagement. The lessons learned from this pilot project provide a framework to guide health policies in similar low-resource contexts, in accordance with the global strategies defined by the Lancet Hematology Commission. 13 In the long term, the integration of SCD services into PHC will contribute to the achievement of UHC goals and the reduction of health inequalities. Conclusion This three-year pilot study demonstrates the feasibility and effectiveness of integrating SCD management services into primary healthcare. The interventions allowed for large-scale early screening, with more than 30,000 pregnant women, 12,000 newborns, and 13,000 symptomatic children tested, thereby promoting early detection and the initiation of care. The community approach, through peer educators, has helped reduce stigmatization and improve service demand, while strengthening the capacity of local structures and establishing an electrophoresis network has enhanced diagnostic quality. However, major challenges persist, including the fragility of supply chains, high staff turnover, and inadequacies in referral systems for severe cases. These constraints highlight the need for sustainable funding, the integration of SCD inputs into national supply plans, and continuous skills enhancement at the peripheral level. Ultimately, the integration of SCD services into PHC is a relevant strategy for progressing toward UHC. To ensure sustainability and national expansion, it is essential to consolidate political will, secure recurrent public funding, and maintain community engagement. The lessons learned from this experience provide a framework to guide health policies in similar low-resource contexts. Abbreviations SCD: sickle cell disease SSA: Sub Saharan Africa WHO: World Health Organization MOH: Ministry of Health HIV: Human immunodeficiency virus NHI: National Health Information HIS: Health Information system ANC: Ante natal care DRC: Democratic Republic of Congo RDT: Rapid Diagnosis Test UHC: Universal health coverage PHC: Primary health care HZ: Health zone NPASCD: National program against sickle cell disease Declarations Funding: This study was supported by Pierre Fabre Fondation to develop the study and collect and analyze data. No Pierre Fabre Fondation funds were used for writing this manuscript. Pierre Fabre Fondation had no role in the study design, data collection, data analysis, decision to publish, or manuscript preparation. Conflicts of interest: the authors have no conflict of interest to disclose. Consent for publication Not applicable. The study reports aggregated and anonymized programmatic data collected through routine health system activities. No individual-level identifiable information is included in this manuscript. Availability of data and materials The datasets used and/or analyzed during the current study are not publicly available due to institutional and ethical restrictions related to the use of routine health system data from the Ministry of Health of the DRC. However, the data are available from the corresponding author on reasonable requests and with permission from the relevant health authorities. The data were derived from routine programmatic reports, laboratory registers, and health facility records collected as part of the pilot project implemented by SANRU Asbl in collaboration with the Ministry of Health. Competing interests The authors declare that they have no competing interests. Authors' contributions Acknowledgements LNP: conceptualized the study, coordinated the implementation of the pilot project, contributed to data interpretation, and drafted the manuscript. AN: contributed to the study design, performed the statistical analysis, and participated in the interpretation of the data and critical revision of the manuscript. FMN: contributed to project implementation, data collection, and manuscript revision. ANM: contributed to community engagement activities, data collection, and critical review of the manuscript. LKP: contributed to project supervision, coordination with health facilities, and manuscript revision. NMML: contributed to the implementation of activities at the national program level and provided technical guidance . PFE : contributed to policy oversight, strategic guidance for the integration of sickle cell disease services into primary health care, and critical revision of the manuscript. All authors read and approved the final manuscript. References Makani J, et al. Sickle cell disease: new opportunities and challenges in Africa. Sci Transl Med. 2021;13(584):eabc1934. Tshilolo L, et al. Neonatal screening for sickle cell anaemia in the Democratic Republic of the Congo: experience from a pioneer project on 31 204 newborns. J Clin Pathol. 2009 Jan;62(1):35-8. doi: 10.1136/jcp.2008.058958. PMID: 19103857. World Health Organization Regional Office for Africa. Sickle-cell disease: a strategy for the WHO African Region (2021–2030). WHO AFRO; 2021. Grosse SD, et al. Sickle cell disease in Africa: burden and research priorities. Am J Hematol. 2020;95(5):E114–E116. Atun R, et al. How integrating health services can contribute to universal health coverage. BMC Health Serv Res. 2021;21:989. Ware RE. How hydroxyurea has changed the natural history of sickle cell disease. Blood. 2022;139(11):1612–1623. Kruk ME, et al. High-quality health systems in the Sustainable Development Goals era: time for a revolution. Lancet Glob Health. 2018;6(11):e1196–e1252. Nnodu OE, Okeke CO, Asala S, Ofakunrin AOD, Ufelle S. Sustainability of newborn screening for sickle cell disease in resource-poor countries: a systematic review. PLoS One. 2024;19(9):e0305110. doi: 10.1371/journal.pone.0305110. Nangunia NM, Mukuku O, Feza VB, Kyembwa YM, Kabesha TB, Tsongo ZK, et al. Integration of newborn screening for sickle cell disease into primary health care in Bukavu, Democratic Republic of Congo: a pilot study. BMC Prim Care. 2025; 26:275. doi:10.1186/s12875-025-02976-x. Nangunia NM, Mukuku O, Feza VB, Kyembwa YM, Kabesha TB, Tsongo ZK, Mutombo AK, Wembonyama SO. Integration of newborn screening for sickle cell disease into primary health care in Bukavu, Democratic Republic of Congo: a pilot study. BMC Prim Care. 2025 Aug 30;26(1):275. doi: 10.1186/s12875-025-02976-x. PMID: 40885912; PMCID: PMC12398986. Brito M, Ginete C, Ofakunrin A, Diaku-Akinwumie I, Inusa BP. Treating sickle cell disease in resource-limited sub-Saharan Africa: recent strategies and recommendations in addressing the gaps for the provision of evidence-based management. Expert Rev Hematol. 2025;18(6):447–462. doi:10.1080/17474086.2025.2500599. Minja IK, Nkya S, Bukini D, Mahenge N, Masamu U, Manongi J, et al. Strengthening global partnerships for sustainable sickle cell disease care: insights from SickleInAfrica at the 77th United Nations General Assembly and the US-Africa Leaders’ Summit. BMJ Glob Health. 2025;10:e017154. doi:10.1136/bmjgh-2024-017154. Piel FB, Rees DC, DeBaun MR, et al. 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Nnodu OE, Sopekan A, Nnebe-Agumadu U, Ohiaeri C, Adeniran A, Shedul G, et al. Implementing newborn screening for sickle cell disease as part of immunisation programmes in Nigeria: a feasibility study. Lancet Haematol. 2020 Jul;7(7):e534-e540. doi: 10.1016/S2352-3026(20)30143-5. Erratum in: Lancet Haematol. 2020 Aug;7(8):e560. doi: 10.1016/S2352-3026(20)30230-1. PMID: 32589979; Additional Declarations No competing interests reported. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-9060625","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"comment","associatedPublications":[],"authors":[{"id":602864180,"identity":"8f1217a2-7c5f-44c2-804f-f3d0086c8fac","order_by":0,"name":"Lukanu Ngwala Philippe","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAAyklEQVRIiWNgGAWjYDACCeYGxgYgzc/AwMYAoQlqYYRokWyAaJFsIFqLwQFitZhLN7ZJzqi5k7j5RvKzBx8qGCTMCemxnHOwTXLDsWeJ226kmRvOOMMgIXOAgBaDG4ltkg/YDgO1JJhJ87Yx1EkQchhEy7/DiZtnpH8DaZEgTsvGtsOJGyRyzIjTYjkjsdlyZt9h4xln3pRJzjgjQViLuUTywZs93w7L9renb5P4UGFDhMPgLIEEEElQA7IW/gOEVY+CUTAKRsHIBADyZUNfenQKLwAAAABJRU5ErkJggg==","orcid":"","institution":"SANRU Asbl","correspondingAuthor":true,"prefix":"","firstName":"Lukanu","middleName":"Ngwala","lastName":"Philippe","suffix":""},{"id":602864182,"identity":"138a3368-3a36-4398-a3df-199766dae0df","order_by":1,"name":"Aliocha Nkodila Natuhoyila","email":"","orcid":"","institution":"SANRU Asbl","correspondingAuthor":false,"prefix":"","firstName":"Aliocha","middleName":"Nkodila","lastName":"Natuhoyila","suffix":""},{"id":602864185,"identity":"54727a68-3416-48da-90a9-fc9b2a659e1b","order_by":2,"name":"Fredy Martial Ngeto","email":"","orcid":"","institution":"Fondation Pierre-Gilles de Gennes pour la Recherche","correspondingAuthor":false,"prefix":"","firstName":"Fredy","middleName":"Martial","lastName":"Ngeto","suffix":""},{"id":602864186,"identity":"8bf8b792-6a48-4425-b0d5-acfb54add618","order_by":3,"name":"Ange Ngonde Mambakasa","email":"","orcid":"","institution":"Rezodrepa ONG","correspondingAuthor":false,"prefix":"","firstName":"Ange","middleName":"Ngonde","lastName":"Mambakasa","suffix":""},{"id":602864192,"identity":"673f1cbb-d4d4-46ab-9061-6e5d6f45d24c","order_by":4,"name":"Lukisa Kulembana Pitchou","email":"","orcid":"","institution":"SANRU Asbl","correspondingAuthor":false,"prefix":"","firstName":"Lukisa","middleName":"Kulembana","lastName":"Pitchou","suffix":""},{"id":602864193,"identity":"1dda8157-9be8-4cf6-b930-7c479314b735","order_by":5,"name":"Nzambi Mpungu Mungenga Leopold","email":"","orcid":"","institution":"Programme national de lutte contre la drépanocytose","correspondingAuthor":false,"prefix":"","firstName":"Nzambi","middleName":"Mpungu Mungenga","lastName":"Leopold","suffix":""},{"id":602864194,"identity":"96dc337f-9158-4d04-b17d-c91cd8f0072e","order_by":6,"name":"Patricia Fotto Esoti","email":"","orcid":"","institution":"Programme national de lutte contre la drépanocytose","correspondingAuthor":false,"prefix":"","firstName":"Patricia","middleName":"Fotto","lastName":"Esoti","suffix":""}],"badges":[],"createdAt":"2026-03-07 20:08:39","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-9060625/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-9060625/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":104287401,"identity":"145762f5-5bff-4946-9b1a-b4aaaefe4f8d","added_by":"auto","created_at":"2026-03-10 05:41:12","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":720847,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-9060625/v1/f3182768-9c66-4a68-bb56-ea55b0afbc29.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Integrating Sickle Cell Disease Care into Primary Health Care in the Democratic Republic of Congo: Lessons from a three-year Pilot project (2022-2024)","fulltext":[{"header":"Introduction","content":"\u003cp\u003eSickle cell disease (SCD) represents a prevalent inherited haematological disorder globally. This constitutes a significant public health issue in sub-Saharan Africa (SSA). Annually, over 300,000 infants are born with sickle cell disease, with approximately 75% of these cases occurring in Africa.\u003csup\u003e1\u003c/sup\u003e Children affected by this condition often do not survive past the age of five without timely diagnosis and treatment. In the Democratic Republic of Congo(DRC), the prevalence of sickle cell trait ranges from 20% to 30%, with 40,000 infants affected annually.\u003csup\u003e2\u003c/sup\u003e Sickle Cell Disease (SCD) represents a significant public health challenge; however, it has often been overlooked in comparison to other pressing issues such as HIV, tuberculosis, and malaria. In the DRC, specialized sickle cell disease services are available solely in tertiary hospitals and urban areas. This indicates that most patients are unable to receive timely diagnosis, preventive care, or treatment.\u003c/p\u003e \u003cp\u003eProblems with the system, like weak supply chains for drugs and tests, insufficient integration with the national health information system, and not enough training for primary care health workers, make this inequity even worse. Also, stigma and a lack of community awareness make it even less likely that people would use the program, which leads to a cycle of late diagnosis and problems that could have been prevented.\u003c/p\u003e \u003cp\u003eRecently, the World Health Organization (WHO) and regional initiatives have promoted comprehensive strategies to integrate SCD into primary health care (PHC) and national health policies, situating this approach within the broader movement towards universal health coverage (UHC).\u003csup\u003e3\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eEvidence from countries such as Nigeria and Ghana suggests that decentralized, community-focused SCD interventions could significantly reduce morbidity and mortality while improving equity in healthcare access.\u003csup\u003e4\u003c/sup\u003e Recognizing this necessity, the Ministry of Health (MOH) of the DRC, with the support of the PFF, initiated a three-year pilot project (2022\u0026ndash;2024) to integrate SCD services into primary healthcare in three health zones (Selembao Kinshasa province, Diulu in Kasai Central province, and Ibanda in Sud Kivu province).\u003c/p\u003e \u003cp\u003eStandardized tools, routine prenatal and postpartum screening, electrophoresis to confirm results, facilitating access to essential medications, and community engagement through peer educators were all part of the solution. The pilot project sought not only to provide services but also to enhance monitoring at the district level, integrate data into the national health information system (NHI), and advocate for increased prioritization of SCD at both national and provincial levels. This study aims to analyze the implementation of the pilot project, highlighting its successes, failures, and the lessons learnt from the experience.\u003c/p\u003e \u003cp\u003eThis initiative aims to contribute to the ongoing discourse on integrating SCD care into primary health care in low-resource settings and to assist policymakers in making informed decisions regarding future national scale up.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003e\u003cstrong\u003eStudy design and setting\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis was a descriptive programmatic evaluation of a pilot project implemented over three years. The intervention was carried out in three health zones\u0026mdash;Selembao (Kinshasa), Diulu (Mbuji-Mayi), and Ibanda (Bukavu) covering more than 40 health areas. These HZ represent both urban and peri-urban settings, providing diverse contexts for integration.\u003cbr\u003e\u0026nbsp;\u003cbr\u003e\u003cstrong\u003eIntervention components\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe pilot focused on multiple synergistic components. \u0026nbsp;The MOH established normative tools, including national guidelines, patient files, and monthly reporting templates for SCD. \u0026nbsp;Systematic screening has been performed in antenatal care (ANC), using electrophoresis to evaluate haemoglobin profiles in pregnant women. \u0026nbsp; Hemotyp RDT was used for newborn screening, and Gazelle automate was used for electrophoresis validation. \u0026nbsp; Children who showed symptoms, in conjunction with their fellow siblings, underwent testing. \u0026nbsp;strengthening the supply chains for essential medications such as Penicillin, Folic acid, paracetamol, and pain management treatments has facilitated access to necessary medicines for individuals. \u0026nbsp;Blood collection and transfusion systems have been enhanced due to their significance in addressing urgent issues.\u003c/p\u003e\n\u003cp\u003eAn important component of the intervention was community involvement. \u0026nbsp;Peer educators, many of whom have sickle cell disease (SCD) themselves, conducted initiatives to enhance knowledge, dispel misconceptions, and reduce stigma among communities. \u0026nbsp;To ensure the effective implementation of the program, PHC officials conducted frequent monitoring and capacity-building sessions. \u0026nbsp;Ultimately, the campaign succeeded in elevating SCD to a public health priority at both national and regional levels. \u0026nbsp;One method used was conducting a multi-national workshop in Kinshasa.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCollecting and analyzing data\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eData was collected from standard health information systems, laboratory logs, and community activity reports. \u0026nbsp;Descriptive analyses were conducted to summarize service utilization, laboratory results, and community engagement outcomes.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis study was conducted in accordance with the ethical principles outlined in the Declaration of Helsinki and national guidelines for research involving human participants in the Democratic Republic of Congo. Ethical approval for the pilot project and the use of programmatic data for research purposes was obtained from the Institutional ethics committee of the protestant university of Congo (ref: CEUPC0231). The project was implemented in collaboration with the National program against Sicke cell disease (NPASCD) and local health authorities in the participating HZ (Selembao, Diulu, and Ibanda). All participants involved in community engagement activities, including peer educators and families receiving screening services, were informed about the objectives of the project and their participation was voluntary. Data collected from health facility records, laboratory registers, and community activity reports were anonymized and de-identified prior to analysis to ensure participant confidentiality and privacy. No personal identifiers were included in the dataset used for this analysis.\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003e\u003cstrong\u003eService uptake and early detection\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eOver a three-year period, 30,665 pregnant women were evaluated during antenatal consultations (Table 1), facilitating early counselling and, when required, partner testing.\u003c/p\u003e\n\u003cp\u003eTable1. Adherence to screening tests and distribution of hemoglobin variants among pregnant women.\u0026nbsp;\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"638\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 45.2978%;\"\u003e\n \u003cp\u003e\u003cstrong\u003eVariables\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.1066%;\"\u003e\n \u003cp\u003e\u003cstrong\u003en\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.4201%;\"\u003e\n \u003cp\u003e\u003cstrong\u003eNumber\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 26.1755%;\"\u003e\n \u003cp\u003e\u003cstrong\u003e% [IC95%]\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 45.2978%;\"\u003e\n \u003cp\u003eTotal women consulted\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.1066%;\"\u003e\n \u003cp\u003e43572\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.4201%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 26.1755%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 45.2978%;\"\u003e\n \u003cp\u003eAdhering to the screening test\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.1066%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.4201%;\"\u003e\n \u003cp\u003e30665\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 26.1755%;\"\u003e\n \u003cp\u003e70,4 [67,1-72,4]\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 45.2978%;\"\u003e\n \u003cp\u003eNo Adhering to the screening test\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.1066%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.4201%;\"\u003e\n \u003cp\u003e12907\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 26.1755%;\"\u003e\n \u003cp\u003e29,6 [27,8-31,1]\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 45.2978%;\"\u003e\n \u003cp\u003eHaemoglobin type\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.1066%;\"\u003e\n \u003cp\u003e30665\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.4201%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 26.1755%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 45.2978%;\"\u003e\n \u003cp\u003eAA\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.1066%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.4201%;\"\u003e\n \u003cp\u003e27277\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 26.1755%;\"\u003e\n \u003cp\u003e88,95 [86,32-90,62]\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 45.2978%;\"\u003e\n \u003cp\u003eAS\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.1066%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.4201%;\"\u003e\n \u003cp\u003e3217\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 26.1755%;\"\u003e\n \u003cp\u003e10,49 [7,76-13,15]\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 45.2978%;\"\u003e\n \u003cp\u003eAC\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.1066%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.4201%;\"\u003e\n \u003cp\u003e74\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 26.1755%;\"\u003e\n \u003cp\u003e0,24 [0,11-0,27]\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 45.2978%;\"\u003e\n \u003cp\u003eSS\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.1066%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.4201%;\"\u003e\n \u003cp\u003e98\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 26.1755%;\"\u003e\n \u003cp\u003e0,32 [0,21-0,39]\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003eNewborns at risk were screened in maternity wards (Table 2), which was a keyway to find out about problems early on. Electrophoresis using Gazelle automate was used to confirm positive cases. Children who had not been screened at the maternity ward were identified during the first postnatal consultation or at the first preschool consultation.\u003c/p\u003e\n\u003cp\u003eTable2. Uptake of screening tests and distribution of hemoglobin variants in newborns\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"631\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 40.5705%;\"\u003e\n \u003cp\u003e\u003cstrong\u003eVariable\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 20.2853%;\"\u003e\n \u003cp\u003e\u003cstrong\u003en\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 13.6292%;\"\u003e\n \u003cp\u003e\u003cstrong\u003eNumber\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25.5151%;\"\u003e\n \u003cp\u003e\u003cstrong\u003e% [IC95%]\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 40.5705%;\"\u003e\n \u003cp\u003eNumber of births\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 20.2853%;\"\u003e\n \u003cp\u003e14510\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 13.6292%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25.5151%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 40.5705%;\"\u003e\n \u003cp\u003eNumber of newborns tested\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 20.2853%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 13.6292%;\"\u003e\n \u003cp\u003e12252\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25.5151%;\"\u003e\n \u003cp\u003e84,4 [82,4-86,7]\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 40.5705%;\"\u003e\n \u003cp\u003eNumber of newborns no tested\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 20.2853%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 13.6292%;\"\u003e\n \u003cp\u003e2258\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25.5151%;\"\u003e\n \u003cp\u003e15,6 [12,3-17,5]\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 40.5705%;\"\u003e\n \u003cp\u003eNewborns at risk hemoglobin type\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 20.2853%;\"\u003e\n \u003cp\u003e3217\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 13.6292%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25.5151%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 40.5705%;\"\u003e\n \u003cp\u003eAA\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 20.2853%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 13.6292%;\"\u003e\n \u003cp\u003e2584\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25.5151%;\"\u003e\n \u003cp\u003e80,32 [78,19-82,7]\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 40.5705%;\"\u003e\n \u003cp\u003eAS\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 20.2853%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 13.6292%;\"\u003e\n \u003cp\u003e587\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25.5151%;\"\u003e\n \u003cp\u003e18,25 [17,5-20,6]\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 40.5705%;\"\u003e\n \u003cp\u003eAC\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 20.2853%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 13.6292%;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25.5151%;\"\u003e\n \u003cp\u003e0,02 [0,01-0,04]\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 40.5705%;\"\u003e\n \u003cp\u003eSS\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 20.2853%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 13.6292%;\"\u003e\n \u003cp\u003e45\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25.5151%;\"\u003e\n \u003cp\u003e1,41 [1,11-1,67]\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003eIncluding symptomatic children and their siblings (Table 3) enabled family-based case detection, hence broadening the intervention\u0026apos;s scope.\u003c/p\u003e\n\u003cp\u003eTable3. Screening uptake and prevalence of hemoglobin variants in symptomatic children and their siblings\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 43.3276%;\"\u003e\n \u003cp\u003eVariable\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 12.825%;\"\u003e\n \u003cp\u003en\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 18.3709%;\"\u003e\n \u003cp\u003eEffectif\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25.4766%;\"\u003e\n \u003cp\u003e% [IC95%]\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 43.3276%;\"\u003e\n \u003cp\u003eTotal number of children received\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 12.825%;\"\u003e\n \u003cp\u003e13610\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 18.3709%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25.4766%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 43.3276%;\"\u003e\n \u003cp\u003eTested\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 12.825%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 18.3709%;\"\u003e\n \u003cp\u003e13536\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25.4766%;\"\u003e\n \u003cp\u003e99,5 [98,1-100,0]\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 43.3276%;\"\u003e\n \u003cp\u003eNo tested\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 12.825%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 18.3709%;\"\u003e\n \u003cp\u003e74\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25.4766%;\"\u003e\n \u003cp\u003e0,5 [0,2-0,7]\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 43.3276%;\"\u003e\n \u003cp\u003eHemoglobin type\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 12.825%;\"\u003e\n \u003cp\u003e13536\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 18.3709%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25.4766%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 43.3276%;\"\u003e\n \u003cp\u003eAA\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 12.825%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 18.3709%;\"\u003e\n \u003cp\u003e10746\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25.4766%;\"\u003e\n \u003cp\u003e79,39 [77,32-81,02]\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 43.3276%;\"\u003e\n \u003cp\u003eAS\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 12.825%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 18.3709%;\"\u003e\n \u003cp\u003e1936\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25.4766%;\"\u003e\n \u003cp\u003e14,30 [12,11-15,49]\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 43.3276%;\"\u003e\n \u003cp\u003eAC\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 12.825%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 18.3709%;\"\u003e\n \u003cp\u003e13\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25.4766%;\"\u003e\n \u003cp\u003e0,10 [0,02-0,27]\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 43.3276%;\"\u003e\n \u003cp\u003eSS\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 12.825%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 18.3709%;\"\u003e\n \u003cp\u003e808\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25.4766%;\"\u003e\n \u003cp\u003e5,97 [5,13-6,71]\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cstrong\u003eHealth system strengthening\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eDRC has implemented a statewide SCD control program since 2003. \u0026nbsp; Its function is to advocate for and lead the fight against disease nationwide. \u0026nbsp;The program, like the disease, lacks sufficient funding to adequately support the response. \u0026nbsp;The pilot initiative to integrate SCD management into PHC enabled the revision and formulation of normative documents outlining the key strategic and operational approaches for SCD control, including the national strategic plan and the national treatment protocol. \u0026nbsp;At the operational level, the project established an automated electrophoresis network across all the HZ implemented. \u0026nbsp;This innovative concept reduced the duration required for diagnosis and enhanced its accuracy. \u0026nbsp;Essential medications were given more consistently; yet issues persisted regarding the assurance of uninterrupted availability. \u0026nbsp;Additionally, safer blood collecting methods were implemented.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCommunity dynamics\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eBeing involved in the community was essential. \u0026nbsp;Peer educators were very helpful in spreading the information and getting families to get tested early. Their involvement also helped lessen the stigma of SCD, which made families and communities more welcoming. \u0026nbsp;Civil society groups supported the advocacy agenda and made sure that the people in the area was involved.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003ePolicy influence\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe pilot helped people at the national level become more dedicated to SCD again. \u0026nbsp;People from Cameroon, Central Africa, and Ivory Coast came to the Kinshasa workshop. It proved that the DRC is a leader in including genetic diseases in primary health care. \u0026nbsp;At this level, discussions made people think about how to include SCD in national health programs.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eChallenges\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe project had a lot of issues, even though it was successful. \u0026nbsp;The supply chains for essential medicines and laboratory reagents remained shaky, which put patient care in danger. \u0026nbsp;It was challenging to keep things moving because there was a lot of staff turnover at PHC sites, which meant that workers had to be trained repeatedly. \u0026nbsp;The referral systems for serious cases like acute chest syndrome or stroke didn\u0026apos;t operate properly since the secondary and tertiary care facilities weren\u0026apos;t good enough. \u0026nbsp; The pilot couldn\u0026apos;t grow beyond three health zones since it didn\u0026apos;t have enough money.\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eSCD services are more than merely started screening and treatment when they are added to PHC. \u0026nbsp;It also needs to strengthen critical areas of the health care system. \u0026nbsp;The pilot\u0026rsquo;s study showed that there was a huge difficulty with the supply chain. \u0026nbsp;We had to organize and work closely with national pharmaceutical programs to make sure that penicillin and folic acid, prophylactic antibiotics, and laboratory reagents were always available. \u0026nbsp;There were several stock-outs that revealed issues in the current supply chain. These stock-outs also showed how crucial it is to include SCD items in national supply planning, along with tuberculosis, HIV, and malaria.\u003csup\u003e3,5\u003c/sup\u003e To make sure that things last for a long time, it\u0026apos;s vital to make buying and delivering things better.\u003c/p\u003e\n\u003cp\u003eThe district health management teams were very important for supervision. \u0026nbsp;District officers were important for more than just reviewing the correctness of service data. They also trained primary care professionals and made sure that services were of high quality. \u0026nbsp;Local ownership and the eventual institutionalization of SCD services at the facility level were made easier because they were close by and constantly ready to help. \u0026nbsp;Similar conditions in Ghana and Nigeria indicate that robust leadership at the district level is essential for the integration of chronic disease care .\u003csup\u003e4,6\u0026nbsp;\u003c/sup\u003eThe pilot demonstrated the fragility of model\u0026rsquo;s dependent on transient donor funding in financial contexts. \u0026nbsp;To ensure the sustainability of SCD services, encompassing medications, diagnostics, and community initiatives, they must be incorporated into the government\u0026apos;s health budget and the necessary primary health care package.\u003csup\u003e7\u003c/sup\u003e saying that resilient health systems need money for cross-cutting tasks instead of disease-specific silos. This is in accordance with what they state.\u003c/p\u003e\n\u003cp\u003eAdding SCD indicators to the national HIS was another important step forward. \u0026nbsp;Using standardized templates to create monthly reports made it easier to keep an eye on indicators and improved how information flowed to central authorities. \u0026nbsp;This experience shows that integrating SCD indicators into standard health information is feasible, hence enhancing the condition\u0026apos;s visibility at the policy level. \u0026nbsp; Lastly, the pilot highlights how crucial it is for people to be active in their communities. \u0026nbsp;Peer educators and civil society organizations improved health-seeking behaviors, reduced stigma, and increased the demand for services. \u0026nbsp; This bottom-up dynamic is in line with research that shows that community involvement is essential for successful primary health care programs.\u003csup\u003e3,5\u003c/sup\u003e This pilot experiment teaches us a lot. \u0026nbsp; It has been demonstrated that SCD services can be integrated into PHC; nevertheless, for enduring effectiveness, systemic issues must be addressed. \u0026nbsp;These include making the supply chain stronger, securing long-term funding, overseeing things at the district level, and integrating SCD services to HIS. \u0026nbsp;These lessons are relevant not only to the DRC but also to other resource-limited countries seeking to improve SCD services within the context of universal health coverage (UHC).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eIntegration of SCD services into primary care: feasibility and impact.\u0026nbsp;\u003c/em\u003e\u003c/strong\u003eThe results of this pilot project demonstrate that the integration of SCD services into PHC in the DRC is not only feasible but also effective. The systematic screening of pregnant women (70.4% adherence) and newborns (84.4%) allowed for early detection, which is essential for reducing infant mortality related to SCD. These rates are comparable to those observed in similar initiatives in West and Central Africa,\u003csup\u003e8,9,10\u003c/sup\u003e confirming that integration into maternity, postnatal and prenatal consultation services is a key strategy for early detection. The community approach, through peer educators, has helped reduce stigmatization and improve the demand for care. This dynamic is consistent with the observations of Brito and Minja,\u003csup\u003e11,12\u003c/sup\u003e which highlight the importance of community partnerships for the sustainability of interventions. Moreover, the establishment of an automated electrophoresis network has improved diagnostic accuracy and reduced turnaround times, in line with the recommendations of Piel and Archer to strengthen local capacities.\u003csup\u003e13, 14\u003c/sup\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eComparison with international experiences\u003c/em\u003e\u003c/strong\u003e. The results of our study align with the conclusions of pilot programs conducted in Nigeria, Ghana, and Mali, where neonatal screening and decentralized care have helped reduce morbidity and mortality related to SCD.\u003csup\u003e15,16,17\u0026nbsp;\u003c/sup\u003eThese experiences confirm that early detection, combined with antibiotic prophylaxis and community education, is an effective approach to improve the survival of children with SCD.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003ePersistent challenges and implications for the healthcare system\u003c/em\u003e\u003c/strong\u003e. Despite these successes, major challenges remain. The fragility of supply chains for essential medicines and laboratory reagents, high staff turnover, and inadequacies in referral systems for severe cases are obstacles also reported by Nnodu\u003csup\u003e8\u003c/sup\u003e and Guindo\u003csup\u003e16\u003c/sup\u003e.These constraints highlight the need to integrate SCD inputs into national supply plans and ensure recurrent public funding, in accordance with WHO recommendations for non-communicable diseases and the principles of UHC.\u003csup\u003e5,7\u003c/sup\u003e\u003c/p\u003e\n\u003cp\u003e\u003cbr\u003e\u003cstrong\u003e\u003cem\u003eSustainability and SCD indicators integration\u003c/em\u003e\u003c/strong\u003e. The integration of SCD indicators into the HIS represents a major advancement, improving the visibility of the disease at the policy level. This approach is consistent with the recommendations of Kruk\u003csup\u003e7\u0026nbsp;\u003c/sup\u003efor resilient systems and the conclusions of Nnodu\u003csup\u003e8\u003c/sup\u003e on the necessity of structured monitoring to ensure the sustainability of programs. The sustainability of interventions will also depend on the institutionalization of SCD services within the essential care package and their funding through the national health budget. Perspectives for national expansion\u003cbr\u003eFor a sustainable national expansion, it is essential to consolidate political will, ensure recurrent public funding, and maintain community engagement. The lessons learned from this pilot project provide a framework to guide health policies in similar low-resource contexts, in accordance with the global strategies defined by the Lancet Hematology Commission.\u003csup\u003e13\u003c/sup\u003e In the long term, the integration of SCD services into PHC will contribute to the achievement of UHC goals and the reduction of health inequalities.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThis three-year pilot study demonstrates the feasibility and effectiveness of integrating SCD management services into primary healthcare. The interventions allowed for large-scale early screening, with more than 30,000 pregnant women, 12,000 newborns, and 13,000 symptomatic children tested, thereby promoting early detection and the initiation of care. The community approach, through peer educators, has helped reduce stigmatization and improve service demand, while strengthening the capacity of local structures and establishing an electrophoresis network has enhanced diagnostic quality. However, major challenges persist, including the fragility of supply chains, high staff turnover, and inadequacies in referral systems for severe cases. These constraints highlight the need for sustainable funding, the integration of SCD inputs into national supply plans, and continuous skills enhancement at the peripheral level. Ultimately, the integration of SCD services into PHC is a relevant strategy for progressing toward UHC. To ensure sustainability and national expansion, it is essential to consolidate political will, secure recurrent public funding, and maintain community engagement. The lessons learned from this experience provide a framework to guide health policies in similar low-resource contexts.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eSCD: sickle cell disease\u003c/p\u003e\n\u003cp\u003eSSA: Sub Saharan Africa\u003c/p\u003e\n\u003cp\u003eWHO: World Health Organization\u003c/p\u003e\n\u003cp\u003eMOH: Ministry of Health\u003c/p\u003e\n\u003cp\u003eHIV: Human immunodeficiency virus\u003c/p\u003e\n\u003cp\u003eNHI: National Health Information\u003c/p\u003e\n\u003cp\u003eHIS: Health Information system\u003c/p\u003e\n\u003cp\u003eANC: Ante natal care\u003c/p\u003e\n\u003cp\u003eDRC: Democratic Republic of Congo\u003c/p\u003e\n\u003cp\u003eRDT: Rapid Diagnosis Test\u003c/p\u003e\n\u003cp\u003eUHC: Universal health coverage\u003c/p\u003e\n\u003cp\u003ePHC: Primary health care\u003c/p\u003e\n\u003cp\u003eHZ: Health zone\u003c/p\u003e\n\u003cp\u003eNPASCD: National program against sickle cell disease\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eFunding:\u003c/strong\u003e This study was supported by Pierre Fabre Fondation to develop the study and collect and analyze data. No Pierre Fabre Fondation funds were used for writing this manuscript. Pierre Fabre Fondation had no role in the study design, data collection, data analysis, decision to publish, or manuscript preparation.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConflicts of interest:\u003c/strong\u003e the authors have no conflict of interest to disclose.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable. The study reports aggregated and anonymized programmatic data collected through routine health system activities. No individual-level identifiable information is included in this manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe datasets used and/or analyzed during the current study are not publicly available due to institutional and ethical restrictions related to the use of routine health system data from the Ministry of Health of the DRC. However, the data are available from the corresponding author on reasonable requests and with permission from the relevant health authorities. The data were derived from routine programmatic reports, laboratory registers, and health facility records collected as part of the pilot project implemented by SANRU Asbl in collaboration with the Ministry of Health.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no competing interests.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026apos; contributions Acknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eLNP:\u003c/strong\u003e conceptualized the study, coordinated the implementation of the pilot project, contributed to data interpretation, and drafted the manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAN:\u003c/strong\u003e contributed to the study design, performed the statistical analysis, and participated in the interpretation of the data and critical revision of the manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFMN:\u003c/strong\u003e contributed to project implementation, data collection, and manuscript revision.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eANM:\u003c/strong\u003e contributed to community engagement activities, data collection, and critical review of the manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eLKP:\u003c/strong\u003e contributed to project supervision, coordination with health facilities, and manuscript revision.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eNMML:\u003c/strong\u003e contributed to the implementation of activities at the national program level and provided technical guidance\u003cstrong\u003e.\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003ePFE\u003c/strong\u003e: contributed to policy oversight, strategic guidance for the integration of sickle cell disease services into primary health care, and critical revision of the manuscript.\u003c/p\u003e\n\u003cp\u003eAll authors read and approved the final manuscript.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n \u003cli\u003eMakani J, et al. Sickle cell disease: new opportunities and challenges in Africa. Sci Transl Med. 2021;13(584):eabc1934.\u003c/li\u003e\n \u003cli\u003eTshilolo L, et al. Neonatal screening for sickle cell anaemia in the Democratic Republic of the Congo: experience from a pioneer project on 31 204 newborns. J Clin Pathol. 2009 Jan;62(1):35-8. doi: 10.1136/jcp.2008.058958. PMID: 19103857.\u003c/li\u003e\n \u003cli\u003eWorld Health Organization Regional Office for Africa. Sickle-cell disease: a strategy for the WHO African Region (2021\u0026ndash;2030). WHO AFRO; 2021.\u003c/li\u003e\n \u003cli\u003eGrosse SD, et al. Sickle cell disease in Africa: burden and research priorities. Am J Hematol. 2020;95(5):E114\u0026ndash;E116.\u003c/li\u003e\n \u003cli\u003eAtun R, et al. How integrating health services can contribute to universal health coverage. BMC Health Serv Res. 2021;21:989.\u003c/li\u003e\n \u003cli\u003eWare RE. How hydroxyurea has changed the natural history of sickle cell disease. Blood. 2022;139(11):1612\u0026ndash;1623.\u003c/li\u003e\n \u003cli\u003eKruk ME, et al. High-quality health systems in the Sustainable Development Goals era: time for a revolution. Lancet Glob Health. 2018;6(11):e1196\u0026ndash;e1252.\u003c/li\u003e\n \u003cli\u003eNnodu OE, Okeke CO, Asala S, Ofakunrin AOD, Ufelle S. Sustainability of newborn screening for sickle cell disease in resource-poor countries: a systematic review. PLoS One. 2024;19(9):e0305110. doi: 10.1371/journal.pone.0305110.\u003c/li\u003e\n \u003cli\u003eNangunia NM, Mukuku O, Feza VB, Kyembwa YM, Kabesha TB, Tsongo ZK, et al. Integration of newborn screening for sickle cell disease into primary health care in Bukavu, Democratic Republic of Congo: a pilot study. BMC Prim Care. 2025; 26:275. doi:10.1186/s12875-025-02976-x.\u003c/li\u003e\n \u003cli\u003eNangunia NM, Mukuku O, Feza VB, Kyembwa YM, Kabesha TB, Tsongo ZK, Mutombo AK, Wembonyama SO. Integration of newborn screening for sickle cell disease into primary health care in Bukavu, Democratic Republic of Congo: a pilot study. BMC Prim Care. 2025 Aug 30;26(1):275. doi: 10.1186/s12875-025-02976-x. PMID: 40885912; PMCID: PMC12398986.\u003c/li\u003e\n \u003cli\u003eBrito M, Ginete C, Ofakunrin A, Diaku-Akinwumie I, Inusa BP. Treating sickle cell disease in resource-limited sub-Saharan Africa: recent strategies and recommendations in addressing the gaps for the provision of evidence-based management. Expert Rev Hematol. 2025;18(6):447\u0026ndash;462. doi:10.1080/17474086.2025.2500599.\u003c/li\u003e\n \u003cli\u003eMinja IK, Nkya S, Bukini D, Mahenge N, Masamu U, Manongi J, et al. Strengthening global partnerships for sustainable sickle cell disease care: insights from SickleInAfrica at the 77th United Nations General Assembly and the US-Africa Leaders\u0026rsquo; Summit. BMJ Glob Health. 2025;10:e017154. doi:10.1136/bmjgh-2024-017154.\u003c/li\u003e\n \u003cli\u003ePiel FB, Rees DC, DeBaun MR, et al. Defining global strategies to improve outcomes in sickle cell disease: a Lancet Haematology Commission. Lancet Haematol. 2023;10(8):e633\u0026ndash;e686. doi:10.1016/S2352-3026(23)00173-9.\u003c/li\u003e\n \u003cli\u003eArcher NM, Inusa B, Makani J, Nkya S, Tshilolo L, Tubman VN, et al. Enablers and barriers to newborn screening for sickle cell disease in Africa: results from a qualitative study involving programmes in six countries. BMJ Open. 2022;12:e057623. doi:10.1136/bmjopen-2021-057623.\u003c/li\u003e\n \u003cli\u003eTwum S, Fosu K, Felder RA, Sarpong KAN. Bridging the gaps in newborn screening programmes: challenges and opportunities to detect haemoglobinopathies in Africa. Afr J Lab Med. 2023;12(1):a2225. doi:10.4102/ajlm.v12i1.2225.\u003c/li\u003e\n \u003cli\u003eGuindo A, Cisse Z, Keita I, Desmonde S, Sarro YS, Tour\u0026eacute; BA, et al. Potential for a large-scale newborn screening strategy for sickle cell disease in Mali: a comparative diagnostic performance study of two rapid diagnostic tests on cord blood. Br J Haematol. 2023;201(4):e19108. doi:10.1111/bjh.19108.\u003c/li\u003e\n \u003cli\u003eNnodu OE, Sopekan A, Nnebe-Agumadu U, Ohiaeri C, Adeniran A, Shedul G, et al. Implementing newborn screening for sickle cell disease as part of immunisation programmes in Nigeria: a feasibility study. Lancet Haematol. 2020 Jul;7(7):e534-e540. doi: 10.1016/S2352-3026(20)30143-5. Erratum in: Lancet Haematol. 2020 Aug;7(8):e560. doi: 10.1016/S2352-3026(20)30230-1. PMID: 32589979;\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":false,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":true,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-public-health","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"pubh","sideBox":"Learn more about [BMC Public Health](http://bmcpublichealth.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/pubh/default.aspx","title":"BMC Public Health","twitterHandle":"@BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Sickle cell disease, Primary health care, Integration of services, Newborn screening, Democratic Republic of Congo","lastPublishedDoi":"10.21203/rs.3.rs-9060625/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-9060625/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eSickle cell disease is one of the most frequent hereditary disorders in sub-Saharan Africa, however it is still not a high focus in public health activities. In Primary Health Care, it's crucial to detect problems early and work collaboratively to solve them in order to minimize the number of people who get sick and die.\u003cbr\u003e\n \u003cstrong\u003eMethods\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eFrom 2022 to 2024, SANRU Asbl undertook a trial project in three selected health zones in the Democratic Republic of Congo (Selembao in Kinshasa province, Diulu Kasai Oriental province, and Ibanda in Sud Kivu province) with support from the Pierre Fabre Foundation to integrate Sscke cell disease services into Primary health care. Interventions included creating national standards, screening pregnant women and newborns, using the Gazelle automate to validate laboratory results through electrophoresis, making it easier for people to get important medicines, improving blood collection systems, educating individuals in the community with the help of peer educators, and ongoing supervision. We collected the information from reports on community activities, lab records, and normal health records.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eIn the pilot study, 30,665 pregnant women, 12,252 neonates, and 13,536 children with symptoms underwent electrophoretic profiling, which allowed the early diagnosis of Sickle cell disease. Community involvement increased awareness, reduced stigma, and enhanced the likelihood of individuals seeking care. The project helped build up a network of labs for confirmatory testing and made sure that medicines were on hand. Nonetheless, challenges persisted regarding the maintenance of a consistent supply, employee turnover, and the referencing system.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusion\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis pilot shows that integrating Sickle Cell disease services into Primary health care is possible and helpful. It makes it easier to get diagnosis and treatment, gets more people involved in the community, and teaches principles for expanding nationwide in the Democratic republic of Congo and places like it.\u003c/p\u003e","manuscriptTitle":"Integrating Sickle Cell Disease Care into Primary Health Care in the Democratic Republic of Congo: Lessons from a three-year Pilot project (2022-2024)","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-03-10 05:40:56","doi":"10.21203/rs.3.rs-9060625/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2026-04-23T11:37:47+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-04-22T19:19:45+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-04-22T17:28:58+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-04-21T12:15:02+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"180336708964917818502824284412162624445","date":"2026-03-25T20:09:40+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-03-25T08:43:35+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"17166045140354230489746681494149140882","date":"2026-03-25T08:24:39+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-03-24T15:38:49+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-03-24T11:42:28+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"201974254752510624386285444024348331478","date":"2026-03-24T07:31:08+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-03-23T12:15:31+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"160664130478207807153140969080377954928","date":"2026-03-23T11:24:12+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-03-23T09:51:48+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"311158163446055499608002415710741239258","date":"2026-03-23T08:56:56+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"272155764910528688348361630668279644235","date":"2026-03-22T13:46:07+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"178691074439957777027006850762611136202","date":"2026-03-22T09:12:36+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"212070892935881606825921900333123694511","date":"2026-03-22T06:01:03+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2026-03-22T05:26:58+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2026-03-13T17:41:21+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2026-03-12T14:00:17+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2026-03-12T13:59:48+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Public Health","date":"2026-03-07T19:51:36+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-public-health","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"pubh","sideBox":"Learn more about [BMC Public Health](http://bmcpublichealth.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/pubh/default.aspx","title":"BMC Public Health","twitterHandle":"@BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"07cc0f23-5475-4b5c-8de2-30bd52920ea2","owner":[],"postedDate":"March 10th, 2026","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2026-05-07T18:39:10+00:00","versionOfRecord":[],"versionCreatedAt":"2026-03-10 05:40:56","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-9060625","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-9060625","identity":"rs-9060625","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}