About Global Sickle Cell Disease Network

Collaborating to reduce the burden of sickle cell disease globally

Approximately 1000 children in sub-Saharan Africa are born with sickle cell disease (SCD) each day. It is estimated that 50-90% of those children will die before the age of five, because 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, since 2009, leading SCD clinicians and researchers from around the world have been brought under the auspices of the Global Sickle Cell Disease Network (GSCDN) to foster a global community of SCD clinicians and researchers to advance the clinical care and study of patients with SCD.

At the 2012 GSCDN conference in Atlanta, USA, Working Group symposia and workshops were held around four thematic areas:
• Natural history and newborn screening
• Infections in SCD
• Hydroxyurea therapy in low-income countries
• Genetic and environmental factors that govern phenotypic diversity

The 2nd Global Congress on Sickle Cell Disease, jointly organized with the Government of Brazil, GSCDN and the Worldwide Initiative on Social Studies of Hemoglobinopathies (WISSH) will be held from November 11-14, 2014 in Rio de Janeiro, Brazil. The GSCDN meeting will occur during the 2nd Global Congress.

The GSCDN meeting is being organized to maximize the interaction between SCD experts from around the world.

Building on the 2012 GSCDN Conference, the 2014 GSCDN meeting will mobilize groups of clinicians and researchers around targeted research needs. We will evaluate progress made by these working groups since the 2012 meeting and build on those successes to develop and deliver new research programs collaboratively. This will also be an opportunity for SCD experts from around the world to meet with one another and form face-to-face linkages that can then move to GSCDN’s web-based networking platform on an ongoing basis.

Symposium presentations by a diverse range of experts will also identify SCD research and clinical care gaps/needs around which SCD researchers and clinicians can collaborate.

Workshops will build on information presented at the symposium to determine collaborative research priorities and a course of action for working groups designated to oversee and conduct research.

Post meeting, web-based tools will allow GSCDN to provide the conference experience to an even broader community unable to attend the meeting; and will continue to draw together those who did attend.

Isaac Odame