Project description
Best practices for sickle cell disease management and newborn screening
Sickle cell disease (SCD) represents a health and societal burden worldwide. The EU-funded ARISE project will establish an inter-agency and multidisciplinary staff exchange programme within the EU institutions, United Kingdom, Africa, Lebanon and the United States to share best practices in newborn screening, diagnosis and treatment of SCD. The project will use implementation science strategies to encourage collaboration, engage stakeholders and set up sustainable services for people affected by the disorder. ARISE will estimate the prevalence of SCD amongst citizens in the consortium countries, establish laboratory diagnosis quality assurance systems for population screening, test the feasibility for newborn and early infant screening, and establish treatment protocols for common complications.
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
Fields of science
Keywords
Programme(s)
Coordinator
70010 Valenzano Bari
Italy
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Participants (12)
SE1 7EH London
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Participation ended
35128 Padova
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75654 Paris
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Participation ended
11527 Athina
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2371 AGIOS DOMETIOS
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WC1E 6BT London
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E1 8BB London
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WC1E 7HT London
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35122 Padova
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33100 Udine
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81100 Caserta
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1549 003 Lisboa
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Partners (8)
Partner organisations contribute to the implementation of the action, but do not sign the Grant Agreement.
Lagos
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Partner organisations contribute to the implementation of the action, but do not sign the Grant Agreement.
Abuja
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Partner organisations contribute to the implementation of the action, but do not sign the Grant Agreement.
1107 2020 Beirut
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Partner organisations contribute to the implementation of the action, but do not sign the Grant Agreement.
61801 URBANA IL
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Partner organisations contribute to the implementation of the action, but do not sign the Grant Agreement.
00200 Nairobi
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Partner organisations contribute to the implementation of the action, but do not sign the Grant Agreement.
800001 Zaria
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Partner organisations contribute to the implementation of the action, but do not sign the Grant Agreement.
10101 Lusaka
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Partner organisations contribute to the implementation of the action, but do not sign the Grant Agreement.
Luanda
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