The endTB Data Sharing Initiative

endTB site in Peru

A visit at the endTB site in Peru 

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 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.

The eDSI repository will be hosted in the European Union (EU) in compliance with EU and French national regulations for hosting health data.

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 eDSI Charter.

The governance framework comprises two key committees:

The first is the Steering Committee, responsible for the defining and overseeing of eDSI repository policies, strategic direction, and management.

The second is the Data Access Committee that will review all requests to use data from the eDSI repository.

Members of the DAC and SC shall adhere to the platform Ethics Framework and Conflict of Interest Policy.

Update as of October 2023

The eDSI platform is being finalized: authorizations to transfer the data into the repository are being requested to each country from which data originated, the hosting platform is being set up and tested, and the documentation to allow researchers to request access to the data is being finalized. We aim at having data from the observational study ready for sharing with researchers starting in early 2024, and data from both clinical trials to be made available to researchers after publication of the primary outcomes, in 2024 for endTB and in 2025 for endTB-Q. This website page will be updated accordingly.

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