About eDSI
A Medical officer looks at an endTB-Q trial participant X-ray at endTB clinic in Pakistan. Credit: Asim Hafeez
The endTB data sharing initiative (eDSI) aims to give access to endTB data for a range of users who share the common goal of increasing knowledge and disseminating information to improve care for MDR-TB patients.
Together, the endTB data represent a unique set of data on MDR-TB in terms of volume (>3,700 participants), geographic origin (18 countries across 4 continents, all WHO Regions) and quality (prospective studies, standardized patient monitoring and outcome assignment; standardized procedures, data collection, and reporting; longitudinal recording of participant characteristics, regimen composition, safety, and treatment response; quality control/assurance including internal & external monitoring for the clinical trials). The endTB project has been mainly funded by Unitaid.
The eDSI repository is hosted in the European Union (EU) in compliance with EU regulations for hosting health data. Authorizations to transfer data into the repository have been requested to each country from which data originated, and a Data Protection Impact Assessment conducted. Institutions who contribute data to the Platform have signed a Data Contributor Agreement.
Governance
Governance of the eDSI has been carefully crafted to ensure equitable, transparent, and ethical access to the data, along with benefit sharing, fair partnerships, and protection of the rights of data contributors.
The main principles governing the eDSI are presented in the Charter.
The governance framework comprises two key committees:
The first is the Steering Committee (SC), responsible for the defining and overseeing of eDSI repository policies, strategic direction, and management. Links to Steering Committee Terms of Reference. The current Steering Committee membership list is accessible here.
The second is the Data Access Committee (DAC) that will review all requests to use data from the eDSI repository. Link to DAC ToRs. The current DAC membership list is coming soon.
Members of the DAC and SC shall adhere to the platform Charter, ethics framework and conflict of interest policy.
eDSI day-to-day management is done to the eDSI Administrator and a Project Management Team made up of representatives from the founding members of the Platform (IRD, MSF and PIH). Please contact us at [[email protected]] if you have any questions or would like further support.
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