ARISE · African Research and Innovative Initiative for Sickle cell Education: Improving Research Capacity for Service Improvement
Horizon 2020 — Marie Skłodowska-Curie Actions
- Duration
- 2019-01-01 → 2024-10-31
- EU contribution
- €2,106,800
- Participants
- 21
- Scheme
- MSCA-RISE
Lines connect the coordinator with its partners. CORDIS does not always give exact coordinates for projects before 2014. These points are placed at city or country level.
Results in brief
African Research and Innovative Initiative for Sickle cell Education: Improving Research Capacity for Service Improvement
Sickle Cell Disease (SCD) is the world’s most common monogenic disease but remains one of the most neglected non-communicable diseases. It affects approximately 400,000 newborns annually and has around 100 million patients worldwide, with over 75% of cases concentrated in sub-Saharan Africa (SSA). SCD is a systemic disease with multiple complications, including anemia, bacterial infections, and chronic organ damage (stroke, kidney failure, cardiac issues), leading to premature mortality. It accounts for approximately 16% of all under-five deaths in SSA. While interventions such as newborn screening (NBS), penicillin prophylaxis, and hydroxyurea have improved early childhood survival, their implementation in SSA is still limited, and the average life expectancy for SCD patients in the region remains below 20 years. The ARISE project was designed to: 1. Implement universal newborn screening and early diagnosis programs, integrating them into national and regional health policies in SSA. 2. Train African healthcare personnel, enhancing scientific excellence and sustainable research capacity through SCD-focused projects. ARISE promoted staff exchange programs between EU and non-EU institutions, strengthening the sharing of best practices in SCD diagnosis and treatment. By the end of the funding period, the project had exceeded expectations, achieving significant results: • 134 secondees completed over 454 months of staff exchange, gaining expertise in research, molecular diagnostics, counseling, data science, and e-health technologies. • A newborn screening model was developed and launched in Angola, Nigeria, and Zambia. • Nigerian health authorities committed to supporting the NBS program in Kaduna State. The project demonstrated that evidence-based interventions, community engagement, and multi-stakeholder collaboration can reduce health disparities. Integrating SCD care into Primary Healthcare Centres (PHCs) will provide a sustainable foundation for long-term treatment. Furthermore, insights from Kaduna State could inform healthcare practices in high-income countries with significant African diaspora populations, increasing ARISE’s global impact.
Data: CORDIS, © European Union
Project objective
The Overarching Objective for this consortium is to establish an inter-agency and multidisciplinary staff exchange programme between researchers, technical and administrative staff interaction within EU institutions as well as reaching out to non-EU countries in Africa, Lebanon and US in order to foster sharing of best practice in Newborn Screening, diagnosis and treatment of Sickle Cell Disease (SCD) leading to improvement in overall disease outcome. Using implementation science strategies for this consortium to foster partnerships and the establishment of patient database, registries and a sustainable service for people living with the disorder.Primary Objectives:- To evaluate the prevalence of sickle cell disease among populations in consortium member countries and identify specific haemoglobin genotypes and phenotypic presentations;- To establish laboratory diagnosis and quality assurance systems for population screening and setting up of SCD national prevention programmes;- To test the feasibility for establishing newborn and early infant screening for SCD in consortium participants;- To establish treatment protocols for common complications -acute and chronic pain, stroke, infections, severe anaemia as well as transition from paediatric to adult care, health promotion strategies and nutrition.In order to achieve these objectives, we designed the following WPs:Scientific Coordination and Project Management Implementing eHealth technologies to support a Newborn screening programme in EU, African Countries and Lebanon.Improving laboratory diagnosis and quality assurance systems for population screening. Newborn SCD screening, screening for neurocognitive complications, clinical care and antibiotic prophylaxis Enhancement of SCD management through training in molecular diagnostic techniques and Genetic Counseling for haemoglobinopathies and performance of epidemiological and Training in Research and academic leadership.Communication and dissemination
Original text from CORDIS.
Participants
- FONDAZIONE PER LA RICERCA FARMACOLOGICA GIANNI BENZI ETS · VALENZANOCoordinatorItaly
- AHMADU BELLO UNIVERSITY · ZariaNigeria
- AZIENDA OSPEDALE UNIVERSITA PADOVA · PADOVAItaly
- American University of Beirut · BeirutLebanon
- GENIKO LAIKO NOSOKOMEIO ATHINON*GENERAL HOSPITAL OF ATHENS LAIKO · ATHINACity levelGreece
- GUYS AND ST THOMAS' NHS FOUNDATIONTRUST · LondonUnited Kingdom
- INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE · ParisFrance
- INSTITUTO NACIONAL DE INVESTIGACAO EM SAUDE · LuandaAngola
- INSTITUTO POLITECNICO DE LISBOA · LISBOAPortugal
- KYPRIAKO IDRYMA EREVNON GIA TI MYIKI DISTROFIA · AGIOS DOMETIOSCyprus
- LAGOS STATE UNIVERSITY OJO · LagosNigeria
- LONDON SCHOOL OF HYGIENE AND TROPICAL MEDICINE ROYAL CHARTER · LondonUnited Kingdom
- MINISTRY OF HEALTH · LusakaCity levelZambia
- STRATHMORE UNIVERSITY · NairobiKenya
- THE BOARD OF TRUSTEES OF THE UNIVERSITY OF ILLINOIS · UrbanaUnited States
- THE ROYAL COLLEGE OF PATHOLOGISTS · LondonUnited Kingdom
- UNIVERSITA DEGLI STUDI DELLA CAMPANIA LUIGI VANVITELLI · CasertaItaly
- UNIVERSITA DEGLI STUDI DI PADOVA · PadovaItaly
- UNIVERSITA DEGLI STUDI DI UDINE · UdineItaly
- UNIVERSITY COLLEGE LONDON · LondonUnited Kingdom
- UNIVERSITY OF ABUJA · AbujaNigeria
Links
- View on CORDIS
- DOI: 10.3030/824021
- https://ec.europa.eu/research/participants/documents/downloadPublic?documentIds=080166e5197f4262&appId=PPGMS
- https://ec.europa.eu/research/participants/documents/downloadPublic?documentIds=080166e5198286f8&appId=PPGMS
- https://ec.europa.eu/research/participants/documents/downloadPublic?documentIds=080166e51b42a187&appId=PPGMS
- https://ec.europa.eu/research/participants/documents/downloadPublic?documentIds=080166e51b42a2e9&appId=PPGMS
- https://ec.europa.eu/research/participants/documents/downloadPublic?documentIds=080166e51b42b8a5&appId=PPGMS
- https://ec.europa.eu/research/participants/documents/downloadPublic?documentIds=080166e51b42be78&appId=PPGMS
- https://ec.europa.eu/research/participants/documents/downloadPublic?documentIds=080166e51b42bfcf&appId=PPGMS
- https://ec.europa.eu/research/participants/documents/downloadPublic?documentIds=080166e51b42dbb4&appId=PPGMS
- https://ec.europa.eu/research/participants/documents/downloadPublic?documentIds=080166e5d65fb0c9&appId=PPGMS
- https://www.ariseinitiative.org/
Data: CORDIS, © European Union
