The Sickle Cell Disease (SCD) is a serious disease until a few decades ago almost unknown in Europe and that today, due to migratory flows to Europe and the globalization processes in the whole world, is instead considered one of the most relevant haematological emergencies due to its particular clinical and therapeutic needs.
It is a serious illness with evolution strongly dependent on the level of care and health organization. In fact, while in countries with a high level of health coverage, patients with SCD have a long survival and adequate quality of life, in low-income countries less than 50% of those born with SCD reach the age of 10 years.
These aspects are tackled in a research project recently approved by the EU under the H2020-MSCA-RISE-2018 program. The ARISE project - African Research and Innovative Initiative project for Sickle cell Education: Improving Research Capacity for Service Improvement, coordinated by the Gianni Benzi Foundation and the Guys and St Thomas' NHS Foundation Trust in London, is aimed at creating a staff-exchange program multidisciplinary expert or early-stage researchers among European reference institutions (Italy, France, UK, Cyprus and Greece) and non-European institutions (Nigeria, Lebanon, Kenya and United States) with the aim of sharing and disseminating best practices for newborn screening, diagnosis and treatment of SCD in the countries of the ARISE Consortium.
Puglia is particularly suited to contribute to the project because of the high concentration of skills and experiences in the field of hemoglobinopathies both in the University, with highly qualified research laboratories in the international field, and Hospital. The Puglia Region is also a forerunner in the implementation of network organizational models for the management of rare diseases, with the Network of Hemoglobinopathies among the first to be activated. Furthermore, the Benzi Foundation has coordinated the HTA-THAL inter-regional registry and collaborates with other experiences of national and international registers.