SPARCo Clinical Coordinating Center

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SPARCo Clinical Center

Prof Julie Makani is Associate Professor in the Department of Haematology and Blood Transfusion at Muhimbili University of Health and Allied Sciences (MUHAS), which is the main clinical, academic and research centre in Tanzania. Tanzania has recognised sickle cell disease (SCD), as a major public health problem and it has been included as a priority condition in the national strategy for Non-Communicable Diseases in the Ministry of Health. With global partnerships, Muhimbili has developed a systematic framework for comprehensive research that is integrated into healthcare, advocacy and education. With prospective surveillance (2004 - 2016) of over 5,000 SCD patients; this is one of the largest single-center, SCD research programs in the world. Scientific themes include clinical and biomedical research (including genomics) and public health [including ethics, social/ behavioral science, population health and health policy]. The aim is to use SCD as a model to establish scientific and healthcare solutions in Africa that are locally relevant and globally significant. Julie trained in Medicine (Tanzania) and Internal Medicine (UK), and completed her PhD in Clinical Epidemiology of SCD. She is a Consultant Physician at the MUHAS University Hospital, MAMC.

Julie have been involved in establishing networks at different levels: institutional, national, regional, Africa and Global to address the burden of SCD in SSA. Julie serves as Principal Investigator (PI) on the Sickle Pan-African Research Consortium (SPARCO 2015-2021) in Tanzania, Ghana and Nigeria which together with the Sickle Africa Data Coordinating Center (SADaCC) forms SickleInAfrica She also serves as Co-PI on SickleGenAfrica, investigating the genetic basis of disease progression and she serves as Site PI for MUHAS for H3ABioNet With partnerships, she has established networks at institutional, national, regional (REDAC), African (Sickle Pan-African Network - 17 countries), and global level ( For advocacy/ awareness, she set up the Sickle Cell Foundation of Tanzania (2010-2016) and a member of the Tanzania Sickle Cell Disease Alliance (2016).

Julie was a Wellcome Trust Research Fellow [Training (2003 - 2009) and Intermediate (2012 - 2017)] and Tutu Leadership Fellow (2009). She received the 2011 Royal Society Pfizer Award for her work in using anaemia in SCD as a model of translating genetic research into health benefit. She is a Fellow of Royal College of Physicians of the United Kingdom and Tanzania Academy of Sciences.

In SickleInAfrica, Julie serves as Lead PI for Sickle Pan-African Research Consortium (SPARCO) Clinical Coordinating Center - SPARCO Center.

Dr. Sangeda is a lecturer and Head of the Department of Pharmaceutical Microbiology at the MUHAS node. Raphael graduated with a B. Pharm from Dr MGR Medical University, Chennai, India in 1998. In 2005, he obtained his MSc in Medical Microbiology at Jomo Kenyata University of Agriculture and Technology. In 2005 he joined Katholieke Universiteit Leuven, now KU Leuven, in Belgium where he graduated in M. Pharm (2006), MSc. Bioinformatics (2008) and PhD (2013) on the use of Bioinformatics approaches to predict HIV drug resistance.

His interest at MWP includes the use of Genome Wide Association Studies (GWAS) in investigating the ‘Genetic epidemiology of Human Immunodeficiency Virus, Hepatitis B virus and Hepatitis C virus infections in individuals with Sickle Cell Disease.

Having started my career in biomedical research (developmental molecular genetics) I now support researchers to undertake research and translate research outputs into real world impacts. Support includes grant funding, communication, partnerships with industry, technology transfer, career development, grant management and capacity building.

I have experience from The Wellcome Trust and Cranfield University, UK. Currently I am working to support development of research management capacity in Tanzania.

Ms. Manongi holds a Bachelor of International Relations (BIR) from the University of Dodoma, Tanzania. She also possesses a Master’s degree in Public Administration from Mzumbe University, Tanzania. She has over four years of experience in Human Resources and administrative activities. She has worked with Dar es Salaam Water and Sewerage Authority (DAWASA), Ando Roofing products, CRDB Bank Tanzania currently working with the Sickle Cell Programme as Head of Project Administration and Finance. She provides administrative support to the Sickle Cell Programme in several areas such as administrative support during grant applications, organizing research meetings/symposia, health care meetings/events and other programme administrative activities. She also has skills in performance management organization recruitment staff welfare issues and other office human resources and administration functions. She possesses strong communication skills, conflict resolution skills and negotiation skills.

Mr Hokororo is an Accountant dealing with Financial Management and Grant Management. He has 23 years experience in a position directly dealing with recording and monitoring of transactions, and reporting financial performance of international NGO’s. His work always involved liaising with financial and banking institutions in ensuring efficient management of liquid resources. Prior to practicing accountancy he worked as an auditor for 7 years in an international audit firm, the then Coopers Lybrand.

Ms. Nkanyemka holds Master’s Degree in Women’s Law (MWL) from Southern and Eastern Regional Centre for Womens’ Law of University of Zimbabwe, Zimbabwe. In 2004, she obtained her Bachelor of Arts in Political Science and Public Administration specialized in International Relations. She is a Programme Management Specialist with over 14 years’ experience on Projects and Programmes Management with Government and International Non-Governmental Organisations (INGOs).

Malula has worked on broad of projects and programme that covers different thematic areas: Health sub-studies, Gender focusing on Women and Children, Advocacy, Research, Monitoring and Evaluation, Risk and Crisis Management, Fundraising, Leadership, Recruitment and Team Management, Project Management, Youth Programs, Trainer on Job Placement Curriculum and Life Skills Trainer, International Development, Capacity Building and Facilitation, Financial Management, Strategic Planning, Product Strategy Development, PPP-Public Private Partnership, Stakeholders Management and Education Programs Management

She is experienced in the Project/ Programme Cycle Management (PCM): situational analysis, planning and budgeting, funding, implementation, evaluation and appraisal for development and sustainability. She practically managed large and small programme’s portfolios.

Malula managed partnership projects and programmes with different funders: Ireland Embassy (Youth Lead Project-Youths Empowerment Research Program), MasterCard (Passport To Success: System Change Project for Youths in Tanzania), DFID Tanzania (Next Generation Youth Research Program), UKAID (Capacity Building for the Ministry of Finance and Planning), British Gas/Shell, Tanzania(Employability Technical Skills-Education Program for Oil and Gas), East Africa Development Bank (Education Training and Fellowship Program for Medical Doctors in Tanzania) and Commonwealth UK (UK Higher Education and Capacity Building for Tanzanians)

She is currently working with Sickle Cell Programme in Tanzania as Programme Manager to the programme and to the SPARCO Center.

Dr. Irene Kida Minja is a Senior Lecturer in the Department of Restorative Dentistry at the Muhimbili University of Health and Allied Sciences. Her academic responsibilities include training of both undergraduate and postgraduate students. She is also a member of the Curriculum Committee, as well as Chair of the Research and Publication Committee of the School of Dentistry. At University level, She is a coordinator of the Health Profession Educators Group (HPEGs) and member of the Senate Research and Publication Committee (SRPC), as well as the Senate Continuing Education and Professional Development (DCEPD) - MUHAS.

She has been involved in a number of research projects that have aimed to improve dental skills treatment and outcomes in Tanzania. She developed an interest in sickle cell disease (SCD) due to the effects that the condition has on oral health. Currently she is supervising a fellow in research to compare pulp blood flow in primary teeth in individuals with sickle cell disease and sickle cell trait with the aim of Improving Oral Care to people with Sickle Cell Disease in Dar es Salaam. Since 2018 she has been working as the Skills Development Coordinator for the Sickle Pan-African Research Consortium (SPARCO) at Hub and Tanzania Site levels to coordinate consortium efforts to develop curricula organize and conduct short courses on sickle cell disease to healthcare workers and researchers with the aim of improving research skills and SCD care in Tanzania and across SSA. Dr. Irene is also a Co-Principal investigator at the Sickle Cell Programme contributing to the management and administration of different projects to ensure that program goals are achieved in line with the institutional policies and regulations of sponsored programs.

Nesia is the Country Director at CBM International - Tanzania country office, a leading International Development Organization on Disability and Inclusion Initiatives. Nesia has over 15 years of extensive experience on international development programme with vast experience on International NGO's management and development, Disability Inclusive Development, Youth, Education, Leadership and Corporate Governance, Health, Business Strategy and Community Development as well as fostering strategic partnerships.

Previously, Nesia has worked at the British Council Tanzania as the Director of Programmes and Business Development, Youth Research Director and Acting Country Director where she has successful established a youth flagship programme on Next Generation Youth Voices and managed to introduce the programme in Tanzania and at the Chatham House Royal Institute of International Affairs Think Tank in London, UK. She has also worked at the capacity of a Senior Programme Manager for PSI Tanzania in the areas of Public Health with a focus on Maternal and Child Health (HIV/AIDS, Malaria, Diarrhea, Pneumonia and Nutrition). She also led the development of country strategic plan for the Essential Medicine Initiative and took part to represent the country at different international UN Life Saving Commodities steering committees and partnership networks. Before joining PSI, she has worked at the University of Health and Allied Sciences - Sickle Cell Centre as the Project Manager and Toyota Tanzania Limited as the Marketing Executive.

Nesia has been selected to serve as a member for the African Women Leaders Network (AWLN) for Tanzania Chapter which is supported by UN Women, Africa Union, the Federal Republic of Germany and the Government of Finland and Sweden to support the realization of the Africa Agenda 2063 on the Africa We want and the Agenda 2030 for Sustainable Development.

She currently volunteers and serves as the Board Director and Board Vice Chairperson for the Foundation for Civil Society (FCS) in Tanzania. She also serves as the SPARCO Hub Advisor for Sickle in Africa Advisory Committee. She was appointed by Tony Elumelu Foundation, the largest African Philanthropic Initiative to mentor youth entrepreneurs in Africa as part of supporting and strengthening the entrepreneurship in Africa. She has previously served as the President of the Netherlands Alumni Association of Tanzania which consist of more than 1,000 Tanzanian alumni graduated from Netherlands Universities. She was also elected to serve as a Chairperson of the Young African Leadership Initiative (YALI-RLC) Chapter in Tanzania as well as the Vice President for Tanzania United States Alumni Association (TUSSAA) for Tanzanian alumni who benefited from the United States of America's Government support.

Nesia is a fellow of the Netherlands Fellowship Programme and she holds a Master?s Degree in Business Administration (MBA) Corporate Strategy and Economic Policy from the University of Maastricht in the Netherlands.

In 2019, Nesia has been recognized as one of the top 50 women in Management in Tanzania. She was also awarded an Honorary Diploma for Leadership, Good Governance and International Cooperation as a global recognition for the New Leaders for Tomorrow from the Swiss Crans Montana Foundation.

She enjoys playing golf, creative designing, unleashing people's potentials and adventures.

Ms. Masamu is a holder of Master of Statistics from the Katholieke Universiteit Leuven in Belgium. She works as Statistician at Sickle Cell Program which is under the department of Hematology of Muhimbili University of Health and Allied Science (MUHAS). As a statistician she provides assistance to a number of projects such as H3ABionet which is a consortium of Pan African Bioinformatics networks for H3Africa (Human heredity and Health in Africa). As part of H3ABionet she is involved in a number of activities such as developing bioinformatics pipelines, designing standard case report forms (crf) and organizing and facilitating bioinformatics training at MUHAS node. As part of her statistical support she also provides assistance to projects such as Sickle Pan-African Research consortium (SPARCO) in areas such as statistical analysis, research design, manuscript development, Genome Wide Association Studies (GWAS) and clinical epidemiology. She is a recipient of Tanzania SPARCO Research fellow grant with the aim of supporting the upgrade of biorepository to support genomics and clinical research at the program. She has currently been appointed as data and research coordinator for the Tanzania SPARCO Clinical and Coordinating Center. She has strong skills in software such as R, Rapidminer, SAS , SPSS,REDCap and Stata.

Ms. Mgaya graduated from University of Dar es Salaam (UDSM), Tanzania in Microbiology and Chemistry. She specialized in Sickle Cell Disease (SCD) with a Postgraduate Diploma in Haemoglobinopathy. She is currently pursuing the MSc by Research and Publication at Muhimbili University of Health and Allied Sciences (MUHAS). She has worked with MUHAS Sickle Cell Programme as a Laboratory Scientist for over 10 years and has specialized in diagnostic services for SCD: haemoglobin electrophoresis isoelectric focusing and High Performance Liquid Chromatography (HPLC) in one of the few laboratories in the country to be able to perform all these tests. She believes the provision of efficient testing systems is key to both SCD care and research. As head of Research Laboratory she manages personnel, quality assurance activities as well as maintaining the biorepository.

Ms. Mgaya spent 2 years at the National Institutes of Health NHLBI’s Laboratory of Early Sickle Mortality Prevention in Bethesda MD USA where she studied the biochemical impact of Hydroxyurea (HU) therapy in SCD patients by measuring gene expression to try to determine early indicators of effectiveness of HU. Josephine's interest is to study interventions for individuals with SCD including supportive measures such as early detection and management of complications associated with HU therapy to improve the standard of care for SCD individuals. In addition to her experience as a Laboratory Scientist through her work with the Sickle Cell Programme she has vast experience in running SCD clinics both for routine care and research purposes. She has been involved in the development of both SCD management and Newborn Screening (NBS) guidelines and in the establishment of the Newborn Screening programme for SCD in Tanzania and contributed in establishing NBS standard operating procedures including those used for sample processing diagnosis results interpretation and feedback to patients. Josephine serves as Tanzania Site Coordinator for SickleGenAfrica coordinating all project activities. In SPARCO, she is coordinating the Standards of Care (SoC) and Skills activities for the consortium while working closely with the Chair of the SoC and Skills Working Group.