WHO is supporting the publicly accessible global individual patient data (IPD) platform for tuberculosis treatment (TB-IPD), an initiative that will increase the knowledge base for normative guidance on optimal treatment modalities for tuberculosis (TB) and stimulate TB research.
This secure platform contains individual records with treatment outcomes of over 35,000 TB patients. Secure storage, data protection and quality control mechanisms compliant with modern data privacy and human rights laws, appropriate governance structures and acknowledgement of data owners are critical for success, and these were key considerations for WHO during the development of the concept and the selection of the team at University College London as the data curator. As data curator for the TB-IPD, their responsibilities are to host, organize, update, maintain and manage the day-to-day functioning of the platform; to ensure the security and confidentiality of the data; facilitate any access to the data according to governance rules; and to provide training and input on statistical analyses planned by groups interested in accessing the data.
The data sharing agreement, data request form other documents and further information are publicly available on the TB-IPD platform website.