An interagency and multidisciplinary staff exchange programme
The ARISE Project
African Research and Innovative Initiative for Sickle cell Education
ARISE – African Research and Innovative Initiative for Sickle cell Education: Improving Research Capacity for Service Improvement is a research project funded by the EU in the framework of the H2020-MSCA-RISE-2018 programme.
Led by Fondazione Gianni Benzi and the Guys and St Thomas’ NHS Foundation Trust in London, the project involves institutions in EU (Italy, France, UK and Cyprus) e non-EU (Nigeria, Lebanon, Kenya and USA) countries.
The ARISE project is aimed at creating an interagency and multidisciplinary staff exchange programme between researchers, early start investigators and other relevant staff members of the partners institutions to share and spread the best practices in Newborn Screening, diagnosis and treatment of SCD, leading to improvement in overall disease outcome.
A large secondments plan between European Union (EU) and non-EU countries will enable collaborative research and training initiatives, covering the following items:
- Sickle Cell Disease (SCD) prevalence;
- genotypes and phenotypes;
- existing “best practices” for Newborn Screening and early diagnosis;
- engagement with patients, families and policy makers to determine barriers to Newborn Screening;
- lab diagnosis and quality assurance systems for population screening;
- treatment protocols for the management of common SCD complications and transition from paediatric to adult care, health promotion strategies and nutrition.
The multi-directional exchanges will foster new collaborative, institutional partnerships, promote scientific and technological SCD research cooperation between Africa, Europe and USA and build capacity towards sustainable improvement in health-related outcomes.
ARISE project will attain its objectives through 8 work packages.
WP1 – Scientific Coordination and Project Management
This work package ensures that all the scientific and administrative aspects of the project are correctly and constantly monitored and managed; moreover, it will ensure that the project meets its objectives within the scheduled timescales.
WP2 – Implementing eHealth technologies to support a Newborn screening programme in African countries and Lebanon
The main objective is to facilitate the implementation of the project through eHealth technologies. Specifically, eLearning and eHealth technologies will be co-designed and co-produced to accelerate the implementation, dissemination, and sustainability of the Newborn screening programme in Nigeria, Kenya and Lebanon and to assess its impact. To achieve WP2 objectives, a context analysis will be performed in the first year of the project.
WP3 – Improving laboratory diagnostics and quality assurance systems for population screening
This work package aims to develop and implement a comprehensive education programme in population screening management approaches including techniques for haematological analysis and propose a prevention program of affected births where suitable and/or acceptable. Moreover, it will improve the quality and capacity of laboratory diagnostic testing services in relation to the diagnosis, treatment and monitoring of SCD.
WP4 – Newborn SCD screening, screening for neurocognitive complications, clinical care and antibiotic prophylaxis
WP4 is aimed at implementing a Newborn SCD Screening Programme in African countries. The UK universal screening programme, implemented in 2004, will be used as basis for a comprehensive approach that involved training for all professionals involved in the management of SCD, protocols for laboratory scientists, clinicians, development of public engagement programme to mobilise the community and families to achieve a high level of public awareness which is essential for policy-makers to institute the appropriate environment for incorporation with the health systems. In addition, the feasibility of preventing neurocognitive deficits by screening for risk of stroke and cognitive decline will be explored.
WP5 – Enhancement of SCD management through training in molecular diagnostic techniques and Genetic Counselling for haemoglobinopathies and performance of epidemiological and genetic research
The objectives of this work package are to improve the molecular diagnostic, counselling and research capabilities of Sub-Saharian Africa partners and to gather important epidemiological data to collect information regarding SCD and other co-inherited major haemoglobinopathies and inform healthcare policies. Training and research projects on molecular techniques, best laboratory practices; improvement of SCD diagnosis and care; genetic counselling will be developed to implement these activities in Sub-Saharian Africa.
WP6 – Training and support for clinical research
This work package will develop capacity for clinical research among clinicians working in sickle cell disease clinics in Africa, with the aim of improving care for sickle cell disease patients. It will also include the establishment of a patients’ cohorts database and support for implementation research.
WP7 – Dissemination and Communication
This work package will develop Communication and Dissemination activities in order to create awareness on the project objectives and achievements. The activities will target academic, clinical and lay audiences as well as scientists, clinicians, teachers, students, patients and their relatives and national patient organisations.
WP8 – Ethics requirements
The activities foreseen in this work package will ensure compliance of the whole project with the ethical standards applicable to project activities.
What is Sickle Cell Disease (SCD)
Sickle Cell Disease (SCD) is a group of inherited red blood cells disorders. People who have Sickle Cell Disease have an abnormal protein in their red blood cells.
Sickle Cell disease is among the world’s most common serious inherited diseases with more than 300,000 annual births, 85% are born in sub-Saharan Africa.