The first meeting of the newly formed Chagas Scientific Advisory Committee (SAC) recently took place to shape the key aims and objectives of the Chagas disease data sharing platform. The platform was recently launched by the Infectious Diseases Data Observatory (IDDO) in collaboration with the Drugs for Neglected Diseases Initiative (DNDi) to assemble and standardise individual level participant data from existing Chagas clinical studies to optimise current treatments and inform new studies to accelerate better treatments for those affected by Chagas disease.
The SAC includes members from across the Chagas research and clinical community with expertise in clinical practice, drug and vaccine development, policy and global health advocacy. Countries represented on the committee include Argentina, Brazil, Colombia, North America and Spain – encompassing endemic regions and areas such as North America where cases of the disease are increasing.
The committee will meet regularly to guide development of the platform, to define and prioritise key research questions that could be addressed using existing clinical data, and to inform the future scientific output of the platform. The experience and knowledge that members bring to the platform will be of significant value to drive and shape its progress. Their role will be crucial in ensuring that the platform’s design and outputs are of long-lasting value – meeting the needs of the wider Chagas research community, researchers and policy-makers.
Included in the 10 members is representation from many of the organisations that signed the Santa Cruz letter late last year calling for an intensification of efforts to control and eliminate Chagas disease.
IDDO in collaboration with DNDi is pleased to announce the launch of the platform and its progress thus far at a critical time when awareness of the disease is gaining momentum and leading to positive action such as the WHO officially declaring 11 April World Chagas Day
“We are excited to be part of this new initiative. The creation of a forum where clinical data will be readily shared will undoubtedly facilitate and accelerate the development of new and complementary tools such as vaccines for the treatment or prevention of Chagas disease.”
“Chagas disease was discovered over a hundred years ago, affecting several million people, mainly in Latin America, and for decades it was ignored and neglected. The Parasitology Service, at the Ricardo Gutierrez Children's Hospital, Buenos Aires, Argentina is a reference center for the diagnosis and treatment of infants and children with Chagas disease.
During many years, our group have been working to improve the medical assistance of infants and children. The main idea to participate in IDDO is to share and disseminate information about the disease in order to improve the diagnosis and treatment for those affected."
“Through the Chagas Platform, the key players that exist at the international level in the different areas of Chagas Disease knowledge will have the opportunity to meet and align strategies from each one of the spheres to improve the control of Chagas Disease at a global level. The prioritisation of actions can only be based on a critical reading of homogenised and updated data provided from the different regions in which cases of T. cruzi infection are registered.”
“Numerous studies and clinical trials have been carried out in recent years. This is a huge opportunity to generate new data and to clarify the unknowns that still surround Chagas disease. Initiatives like this represent an act of generosity and an example of networking, where the scientific community joins in favour of a single objective: To better understand Chagas disease and to improve the care of the patients.”
“The research needs confronting Chagas disease are complex and bigger than any single player can address on their own. However, there is strength in numbers. By pooling information and resources, we can gain insights into some of the major questions confronting us today, and that will translate into better care for the patients we see."