Data privacy
endTB (expand new drug markets for TB) is a partnership between Partners In Health, Médecins Sans Frontières (France, Switzerland, Holland) and Interactive Research & Development (the “endTB Partners”) that aims to find shorter, less toxic and more effective treatments for multidrug resistant TB. For this project, an observational study and two clinical trials were carried out and allowed the establishment of a unique set of data (endTB Data).
Personal data is processed and potentially shared through the project, from studies Participants, Data Requestors or Interested Individuals, within or outside the endTB Data Sharing Initiative (eDSI).
eDSI consists in a data repository that hosts the endTB Data. The purpose of this platform is to allow access to endTB Data to a range of users who share the common goal of increasing knowledge and disseminating information to improve care for MDR-TB patients. We are committed in making our best efforts to keep Participants informed: please find updated content on the endTB Data Sharing Initiative here.
Why are endTB Partners processing personal data?
As part of the endTB partnership and data sharing (within and outside eDSI), the endTB Partners are processing personal data of the Participants from the observational study and the clinical trials.
First of all, we would like to thank you for enrolling in the endTB studies and contributing to better treatment of multi-drugs resistant tuberculosis. We hope you have been able to look at the results of the observational study and clinical trials.
Additionally, we would like to inform you about the purposes for which we are processing your personal data:
Collection and analyses of data in the frame of the observational study and the clinical trials;
Further data sharing, including sharing through the eDSI platform, to develop and promote research on treatment and diagnosis of drug-resistant TB.
In addition, the Partners are also processing personal data of the researchers who request access to the endTB Data within and outside eDSI to conduct further research purposes (Data Requestors) for the following purposes:
Manage and review the Data Access Request submitted to the Data Access Committee;
Communicate with the Data Requestors on their Data Access Request;
Publish the approved application status on the endTB website;
Establish the Data Access Agreement when the Data Access Request is approved;
Ensure the security of the endTB Data as agreed in the Data Access Agreement.
Personal data is also collected when Committees members send their registration documentation, for the following purposes:
Manage eDSI Committees
Communicate with the Committees members
Publish the Committees membership on the endTB website.
Finally, personal data is also collected when an Interested Individual signs in on the website to receive information on eDSI, for the following purpose:
Communicate back to this individual with updated information on eDSI.
What are your rights over your personal data?
Participants, Data Requestors and Interested Individuals may request access to their personal data, rectification, deletion or portability of their personal data, they can also object to the processing of their personal data by the endTB Partners or request the restriction of such processing activities.
For Participants:
Participants may exercise these rights by email by contacting [email protected]
Participants shall ensure that they include the following information in their request:
- The right(s) they want to exercise
- Their patient ID, if they still have it
- The study, TB facility and country where they were enrolled
For Data Requestors, Committees members and Interested Individuals:
They may exercise these rights by email by contacting [email protected].
They shall ensure that they include the following information in their request:
- The right(s) they want to exercise
- Their name and surname
Find out more on the processing of your data
To learn more on the processing of your data, please read our Data Privacy Policy.
We invite you to browse these other useful webpages:
