Data governance

We have developed a number of documents and processes that are designed to protect the interests of data contributors, research participants, and researchers, and to guide the actions of the governance bodies.

Credit: iStock
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Credit: iStock

Individual patient data (IPD) for the VL Platform are collected by engaging and encouraging researchers to share clinical trial data or operational data and meta-data through our secure online web-based portal . A Privacy Impact Assessment has been carried out as part of our data governance procedures to ensure that the IDDO platform adheres to appropriate legal and ethical frameworks, and that data are secured at the highest technical standard. Compliance with the African Union Convention on Cyber Security and Personal Data Protection (2014) and the European Union General Data Protection Regulation (2018) have been incorporated into the platform design and procedures. 

Data contribution is guided by the Terms of Submission (ToS) . Data contributors are required to confirm that data have been anonymised before they are transferred to IDDO. IDDO verifies anonymisation using the HIPAA Safe Harbour method  in a secure environment after data have been submitted.

Researchers wishing to access data will be required to submit a request to an independent Data Access Committee who will make decisions according to defined terms and conditions . A Data Transfer Agreement (DTA)  must be signed by the appropriate signatory from the data requestor’s institution before data are transferred to the requestor.

If you have any queries about our data governance arrangements, please email info@iddo.org