The ARISE consortium established an inter-agency and multidisciplinary staff exchange programme between researchers and other staff members among the partners. This programme fostered the sharing of best practices in Newborn Screening, diagnosis, and treatment of Sickle Cell Disease (SCD), leading to improvements in overall disease outcomes. A large secondment plan enabled collaborative research and training initiatives, covering the following areas: analysis of SCD prevalence in consortium member countries and identification of specific haemoglobin genotypes and phenotypic presentations; establishment of laboratory diagnosis and quality assurance systems for population screening; development of national SCD prevention programmes; newborn and infant screening for early diagnosis of SCD; treatment protocols for the management of common SCD complications; transition from paediatric to adult care; and health promotion and nutrition strategies.

ROLE OF THE FOUNDATION
The Foundation was responsible for the Scientific Coordination and Project Management of ARISE, in collaboration with Guy's & St. Thomas' Hospital NHS Foundation Trust (UK). The Foundation led the WP2 activities aimed at implementing eHealth technologies to support a newborn screening programme in Kenya, Nigeria, and Lebanon, and oversaw all ethical requirements of the project (WP8).

FUNDED BY: This project has received funding from the European Union’s Horizon 2020 research and innovation programme under the Marie Skłodowska-Curie grant agreement No 824021

DURATION: Jan 2019 - Oct 2024

PARTNERS:

• Guy’s & St. Thomas’ Hospital NHS Foundation Trust (UK)
• Fondazione per la Ricerca Farmacologica Gianni Benzi onlus (Italy)
• Lagos State University (Nigeria)
• University of Abuja (Nigeria)
• University of Ilorin (Nigeria)
• International Foundation Against Infectious Disease in Nigeria – IFAIN (Nigeria)
• Zankli Medical Centre (Nigeria)
• Sickle Cell Cohort Research – Score Foundation (Nigeria)
• University of Padova (Italy)
• University of Udine
• Università degli Studi della Campania “Luigi Vanvitelli”
• American University of Beirut (Lebanon)
• Institut National de la Sante et de la Recherche Medicale (France)
• Instituto Politécnico de Lisboa (Portugal)
• The Cyprus Foundation for Muscular Dystrophy Research (Cyprus)
• University College London (UK)
• The Royal College of Pathologists (UK)
• University of Illinois at Chicago (USA)
• London School of Hygiene & Tropical Medicine (UK)
• Strathmore University (Kenya)
• Ahmadu Bello University (Nigeria)
• Kaduna State University (Nigeria)
• Kaduna State Assembly (Nigeria)
• PANAF schools (Nigeria)
• Ahmadu Bello University Teaching Hospital
• Barau Dikko Teaching Hospital (Nigeria)
• Ministry of Health/ University Teaching Hospitals-Children’s Hospital
• Health Research Center of Angola