Developing a Global Agenda for Sickle Cell Disease: Report of an International Symposium and Workshop in Cotonou, Republic of Benin

Sickle cell disease (SCD) is one of the most common monogenetic diseases worldwide. Although there have been some advances in the management of SCD in high-income countries, much remains to be learned about the mechanisms underlying the wide phenotypic diversity of the disease. In low-income countries, basic facilities for management are lacking, systematic screening is not common practice, and diagnosis is made late. The case has been made for the need to develop long-term partnerships between SCD clinicians and researchers in high- and low-income countries in order to further research and improve clinical care globally. In response to this critical need, a meeting of SCD experts from around the world was held in Cotonou, Republic of Benin, on January 26–29, 2009. The meeting was entitled “Advancing Sickle Cell Disease Patient Care Through Global Research.” In addition to plenary sessions, small study groups discussed the following topics: the natural history of SCD in Africa and elsewhere, neonatal screening programs, infectious diseases in SCD, hydroxyurea therapy in Africa and other regions, and genetic factors involved in phenotypic diversity. A roundtable discussion on experience with collaborative programs to establish SCD centers in low-income countries highlighted steps that are necessary to establish these programs and the problems that have been encountered. During a session on capacity building, small study groups consisting of participants from low-, middle-, and high-income countries discussed collaborations for the identification, clinical care, and study of SCD patients in low-income countries. There was agreement to establish the Global Sickle Cell Disease Network to foster a global community to advance the clinical care and study of patients with SCD. The next meeting of the network will take place in Accra, Ghana, on July 20–23, 2010.