CORDIS
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African Research and Innovative Initiative for Sickle cell Education: Improving Research Capacity for Service Improvement

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
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Coordinator

FONDAZIONE PER LA RICERCA FARMACOLOGICA GIANNI BENZI ONLUS

Address

Via Abate Eustasio 30
70010 Valenzano Bari

Italy

Activity type

Research Organisations

EU Contribution

€ 230 000

Participants (8)

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GUYS AND ST THOMAS' NHS FOUNDATIONTRUST

United Kingdom

EU Contribution

€ 460 000

AZIENDA OSPEDALIERA DI PADOVA

Italy

EU Contribution

€ 151 800

INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE

France

EU Contribution

€ 202 400

GENIKO LAIKO NOSOKOMEIO ATHINON*GENERAL HOSPITAL OF ATHENS LAIKO

Greece

EU Contribution

€ 234 600

THE CYPRUS FOUNDATION FOR MUSCULAR DYSTROPHY RESEARCH

Cyprus

EU Contribution

€ 220 800

UNIVERSITY COLLEGE LONDON

United Kingdom

EU Contribution

€ 170 200

THE ROYAL COLLEGE OF PATHOLOGISTS

United Kingdom

EU Contribution

€ 312 800

LONDON SCHOOL OF HYGIENE AND TROPICAL MEDICINE ROYAL CHARTER

United Kingdom

EU Contribution

€ 124 200

Partners (6)

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LAGOS STATE UNIVERSITY OJO

UNIVERSITY OF ABUJA

American University of Beirut

THE BOARD OF TRUSTEES OF THE UNIVERSITY OF ILLINOIS

STRATHMORE UNIVERSITY

AHMADU BELLO UNIVERSITY

Project information

Grant agreement ID: 824021

Status

Ongoing project

  • Start date

    1 January 2019

  • End date

    31 December 2022

Funded under:

H2020-EU.1.3.3.

  • Overall budget:

    € 2 106 800

  • EU contribution

    € 2 106 800

Coordinated by:

FONDAZIONE PER LA RICERCA FARMACOLOGICA GIANNI BENZI ONLUS

Italy