• Isaac Odame.
• Global Sickle Cell Disease Network, Programme for Global Paediatric Research, The Hospital for Sick Children, Toronto, Ontario, Canada. isaac.odame@sickkids.ca
• Am J Prev Med. 2010 Apr 1; 38 (4 Suppl): S571-5.

AbstractSickle 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.Copyright 2010 American Journal of Preventive Medicine. Published by Elsevier Inc. All rights reserved.

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