This new year starts with three new challenging European research projects directly involving the Gianni Benzi Foundation: ARISE – African research and innovative initiative for sickle cell education: improving research capacity for service improvement, EJP RD – European Joint Programme for Rare Diseases and Pepper – Platform for the evaluation, validation and processing of research performance.
ARISE – African research and innovative initiative for sickle cell education: improving research capacity for service improvement is a project funded by Horizon 2020, involving 15 partners from Italy, Cyprus, France, UK, Nigeria, Kenya, Lebanon and USA.
The ARISE consortium will establish an inter-agency and multidisciplinary staff exchange programme between researchers and other staff members among partners. This programme will foster sharing of best practice in Newborn Screening, diagnosis and treatment of Sickle Cell Disease (SCD) leading to improvement in overall disease outcome. A large secondments plan will enable collaborative research and training initiatives, covering the following items: 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; setting up of SCD national prevention programmes; newborn and infant screening for SCD early diagnosis; treatment protocols for the management of common SCD complications and transition from paediatric to adult care, health promotion strategies and nutrition.
Gianni Benzi Foundation is responsible for the ARISE Scientific Coordination and Project Management, in collaboration with Guy’s & St. Thomas’ Hospital NHS Foundation Trust (UK). The Foundation will lead the activities aimed at implementing eHealth technologies to support a Newborn screening programme in Kenya, Nigeria and Lebanon and will oversee all the project ethical requirements.
EJP RD – European Joint Programme for Rare Diseases brings over 130 institutions from 35 countries to create a comprehensive, sustainable ecosystem allowing a virtuous circle between research, care and medical innovation. The EJP RD has two main objectives: on one hand, to improve the integration, the efficacy, the production and the social impact of research on rare diseases through the development, demonstration and promotion of Europe/world-wide sharing of research and clinical data, materials, processes, knowledge and know-how; on the other hand, this project aims at implementing and further developing an efficient model of financial support for all types of research on rare diseases (fundamental, clinical, epidemiological, social, economic, health service) coupled with accelerated exploitation of research results for benefit of patients.
In this big H2020 project the Gianni Benzi Foundation leads the activities necessary to provide the proper strategy to address ethical, regulatory and legal issues, ensuring that relevant rules are complied with within the course of the project. This will allow EJP RD to perform not only ethically-sound but also regulatory-compliant multi-national research.
Pepper – Platform for the evaluation, validation and processing of research performance is a regional project funded by POR Puglia FESR FSE 2014-2020 – INNOLABS action, involving 6 partners from Puglia.
The project aims to meet the needs of end users through the creation of a web-based IT platform for measuring and comparing the performance of research activities by identifying indicators and defining the methods used to measure them. The results of the measurements will be represented in real time by customized dashboards, also able to monitor them according to pre-established protocols agreed with the end user.
The Gianni Benzi Foundation is responsible for mapping the activities and research centers, defining and implementing the testing plan and validation of the platform.
Follow us and discover the developments of these new projects. Stay tuned!