Overview
The Chagas disease data platform is founded upon a collaborative framework that aims to bring together partners including individual researchers in Chagas endemic regions, leading global research institutions, policy specialists and funders from across the globe. The theme is coordinated by a team based at IDDO and at the Drugs for Neglected Diseases initiative’s Latin America Office.
IDDO in collaboration with DNDi are pleased to announce development of a Chagas clinical data platform. Initiation of this project will see the team over the coming months:
- Develop and execute a governance and ethical framework for the platform to ensure the equitable sharing of data.
- Build a database infrastructure (including secure web environment for data submission) to ensure the long-term security and accessibility of data.
- Develop a data management plan to facilitate integration of individual patient datasets into an accessible, harmonised, multi-disciplinary global resource available for immediate and long-term use.
- Work with stakeholders from the patient, clinical, research and policy communities to define a prioritised, consensus-driven research agenda so that data contributed to a future platform can be productively used for modelling and meta-analysis by the scientific community.
As this project advances additional information will be made available on the website. To stay informed on the development of the Chagas data platform sign-up for our newsletter.
Building a global Chagas data platform will require extensive collaboration. We are looking to engage with stakeholders and leaders of the Chagas disease community as early as possible to ensure that the design, purpose and future output of a platform meets the interests and fulfils the needs of potential partners, researchers, end users and policy makers. We look forward to working together with the Chagas community towards the common purpose of producing a stronger evidence base for the treatment and elimination of Chagas disease.
DNDi
DNDi is a not-for-profit research and development organisation, working to deliver new treatments for neglected patients, in particular those suffering with Chagas disease, sleeping sickness (human African trypanosomiasis), leishmaniasis, filarial infections, mycetoma, pediatric HIV, and hepatitis C. Since its inception in 2003, DNDi has delivered eight new treatments. DNDi’s strategy for Chagas disease consists of three pillars: improving diagnostic and therapeutic tools through innovation in research and development, fostering collaboration and strengthening capacity in endemic countries through a scientific platform, and increasing patients’ access to diagnosis and treatment.