In order to increase the knowledge base for normative guidance on optimal treatment modalities for drug-resistant tuberculosis (DR-TB), WHO is announcing a publicly accessible global individual patient data (IPD) platform for drug-resistant tuberculosis treatment (DR-TB-IPD). This will be a secure but accessible platform containing outcomes of over 10,000 drug-resistant TB patients as the starting point and expanding this with data received in response to a recent public call for data.
The data in the DR-TB-IPD can catalyze knowledge generation through research, and contributes to the basis for evidence-informed guideline development. Providing open and equitable access to the DR-TB-IPD offers the greatest opportunity for learning from this resource and is in the spirit of open data. Secure storage, quality control mechanisms, appropriate governance structures and acknowledgement of data owners are critical for success and these were key considerations for WHO during development of the concept and the selection of the data curator.
WHO selected a team from University College London (UCL) as the data curator, for the next 5 years based on their response to a call for expressions of interest. As data curator for the DR-TB-IPD their responsibilities will be 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.
Over the coming months, data from the IPD currently housed at McGill University and data from the recent public call for data will be transferred to UCL where this is agreed upon by data owners. The UCL team will then make key documents available, including on the governance structure of the DR-TB-IPD, summary information about contents of the data base, terms of data submission, and the gaining access to data from the DR-TB-IPD. Future Public Calls for Data will follow to further enrich and keep the DR-TB-IPD up to date.
Drug-resistant tuberculosis continues to be a massive public health problem, taking a heavy toll on patients, communities and health care systems. The development of new TB drugs and the use of repurposed drugs has led to new guidance by WHO and improvements in patient outcomes. The use of individual participant data, shared by country programs and research groups, has been instrumental to support generation of knowledge and evidence-informed guidelines.