Obiageli E. Nnodu Associate Professor of Haemato-Oncology Centre for Sickle Cell Disease Research and Training (CESRTA) University of Abuja

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1 Obiageli E. Nnodu Associate Professor of Haemato-Oncology Centre for Sickle Cell Disease Research and Training (CESRTA) University of Abuja

2 Background Background of Cancer 2010 Three invitations and a promise 1. Strategy for the control of SCD in Nigeria 2. Advocacy for inclusion of SCD in H3Africa 3. Collaboration for SCD in Africa 4. 1 st Congress in SCD in Accra 5. Scoping of major stakeholders 6. Situation report individual effort year plan of action. 8. The birth of the Sickle Cell Network

3 The Nigerian Sickle Cell Disease Network,

4 Education, Guidelines and Protocols National SCD Policy Research ( Infections, Hydroxyurea, Natural History Phenotypic Characteristics/Diversity) Newborn Screening Finance and Publicity Working Groups

5 Priorities Uniform counselling and management guidelines Protocol for newborn screening Inventory of available human and material resources in country Partnerships with foreign centres and institutions. Research- Infections Hydroxyurea Natural History Capacity Building (Workshops, training )

6 Making the Difference Identified the key players in the field Provided a platform for collaboration and advocacy at all levels. Recognition by the government. (FMOH) Worked with the FMOH to produce: Uniform counselling and management guidelines Protocol for newborn screening. Partnerships with foreign centres and institutions. Provided educational opportunities for all involved with the care of SCD patients through workshops. Report of Ongoing Work at CESRTA at the AfrosickleNet Meeting, Loyola University Chicago,

7 The Sickle Cell Support Soceity of Nigeria

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9 Working With FMOH NCD Policy 5 Year strategic plan of action with monitoring framework SCD a major NCD in Nigeria Screening and health maintenance at primary health care level. NCD Desk Manual Effort at clinical centres 6 Variant NBS HPLC in geopolitical zones

10 Lessons from Sickle CHARTA Need to strengthen the system At Network level Institutional level A number of studies being carried out at Network Level At institutional level a multidisciplinary team of clinicians and researchers were assembled to offer comprehensive care and to undertake basic and clinical and translational research into SCD at CESRTA.

11 Working with the SCSSN 39 Collaborating Centres Offering of the SCSSN Tertiary Health Care Services

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13 Problem with Uptake Paucity of data: Data on screening since 2012 Number of samples screened Number of babies identified to have SCD Number of babies registered into data base Number of babies followed up Interventions given

14 If we aim to reduce the national and global burden of SCD, is the present system of screening and care for individuals with SCD effective and sustainable?

15 Current Model of Care for SCD Hospital based with poor coverage of affected individuals. Not accessible to majority of the population ( Total of 23,750 in clinical centres cf to expected no of 3.34 m )

16 A Primary Health Care model may help to deliver services for SCD to more people at community level. This model can be integrated into existing programs such as the NPI, MSS, SURE-P under the NPHCDA.

17 Screening for SCD at PHCs Gwagwalada Town Clinic, GAC, Federal Capital Territory Immunization Clinics, Tuesdays and Thursdays for infants 6 months and above all patients attending the clinic Screening program to be integrated into HOD Health Programs of the Area Council. Will give antimalarial and folic acid. Pneumococcal vaccines being introduced. Challenges Not funded. Helena Biosciences V8Capillary Electrophoresis System. Startup reagents purchased by the University plus Hybrid Solar Inverter, but will require 24 hour electricity & Dedicated Staff

18 Proposed Basic Interventions for the Control of Sickle Cell Disease 1. Raising public awareness about SCD 2. New-born screening 3. Screening for sickle cell disease at primary health care centres 4. Registry of patients with SCD for prospective follow up 5. Prophylaxis for infection, pneumococcal vaccines, oral penicillin, use of insecticide treated bed nets and anti-malarial 6. Health maintenance at PHC (comprehensive care through integration into Secondary and Tertiary Health Care Centres) 7. Genetic counselling of individuals with abnormal haemoglobin i.e. AS, AC SS, SC. 8. Nutrition 9. Education of patients and care givers about sickle cell disease including what to do in acute conditions before coming to the hospital. 10. Optimal hydration by teaching the patients to drink enough fluids to make their urine clear and whitish without yellow colour

19 AfrosickleNet Meeting, Loyola University Chicago, Compared POCT with CAE and HPLC in adults and children attending GTC in Gwagwalada Area Council of the FCT. SickleSCAN showed good sensitivity, specificity and test efficiency and could be used as viable screening tool that can easily be applied in community-based screening for early diagnosis of SCD with little expertise and low cost. Next Steps with the POCT Acceptability and feasibility of using POCT in screening in the zones of the Sickle Cell Network.

20 CESRTA To be a Centre of Excellence for Basic and Translational Research in Sickle Cell Disease (SCD) aimed at addressing existing knowledge gaps, finding cheaper, safer therapies for SCD as well as innovative ways of reducing the prevalence and burden of SCD in Nigeria. To build capacity of faculty and students to conduct research To train various categories of health and other workers to provide comprehensive care for SCD. To establish multidisciplinary, multi-institutional collaborative partnerships to carry out specific research projects in SCD and other NCDs.

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22 Outputs in the First One Year A. ESTABLISHED A MULTIDISCIPLINARY RESEARCH TEAM B. PROPOSALS DEVELOPED 1. Participated in the NIH SCD in SSA CC under SPARCo 2. Developing an interdisciplinary network for sickle cell disease studies in Nigeria (University of Abuja, University of Ibadan, and University of Chicago). (Olopade, Nnodu, Odumuh, Owolabi, Nwankwo 3. Database development for SCD PI Director of the Computer Centre 4. National Research Fund bid by TETFUND ( Nnodu PI, N40m) 5. Screening for Renal Abnormalities in Patients with Sickle Cell Trait in North Central Nigeria ( PI Dr M. Manvem) C. GRANTS OBTAINED 1. Economic burden of sickle cell disease in Nigeria (Multicentre study: UNN, UI - Ughasoro, Nnodu, Brown.) 2. Anti-sickling activity, haematological and biochemical effects of medicinal plants from rural communities in Gwagwalada (PI Dr A. Alli) 3. Metagenomics of Leg Ulcers at the University of Abuja Teaching Hospital ( PIs Oyekanmi, Abubakar, Falusi) 4. Education intervention for the control of sickle cell disease in Gwagwalada Area Council PI ( Professor T. Odumuh) COMPLETED RESEARCH 1. POCT for sickle haemoglobin in PHCs

23 Building Bridges North to South UK-Nigeria Sickle Cell Disease Research Workshop in How to screen for sickle cell disease in an affordable manner using West African public health systems?

24 Building Bridges South to South Julie Makani Guest Lecture Members of the University Community MOU to be developed between Abuja University and MUHAS

25 Collaborations 1. Federal Ministry of Health Non -Communicable Diseases Unit 2. Sickle Cell Support Society of Nigeria (SCSSN) which is working closely with the government and professional groups within the country and in Diaspora for the control of SCD in Nigeria with 39 Collaborating Centres 3. Centre for Genomics Research and Innovation, National Biotechnology Development Agency, (CGRI/NABDA), Abuja 4. Institute of Human Virology, Abuja. 5. University of Nebraska Medical Center (Infection Surveillance). 6. Sickle CHARTA, SPARCo, SWAN, SPAN. 7. University of Chicago Global Health Initiative

26 Summary Challenges in developing effective intervention programs for sickle cell disease in Sub-Saharan Africa and the role of individuals, institutions, research teams and multi institutional multilateral partnerships. CESRTA borne out of the need to look inwards, starting small pulling others along. Great location: 10 minutes from the international airport. Central ease of access for participants from all over the country for programs. Collaborating Teaching Hospitals, a network of District Hospitals and PHCs Support for data analysis Research Questions Comorbidities associated with the sickle cell trait How can we screen for SCD in an affordable manner using West African Public Health Systems?

27 To Tayo Bamidele and the Professor Richard Cooper for the invitation to participate My Colleagues at SCSSN and SPARCo for a unique brand of DIY Collaboration that forces you to learn or.. To everyone, thanks for listening. Appreciation