About IDDO

Launched in 2016, the Infectious Diseases Data Observatory (IDDO) exists to promote the reuse of individual participant data across the global infectious disease community. IDDO curates submitted data from many different sources in-house, to produce freely available harmonised datasets, enabling scientists to pool multiples datasets and answer new research questions from this existing data.   

It also provides the methods, governance and infrastructure to translate clinical data into evidence to improve health outcomes worldwide. IDDO incorporates the pioneering WorldWide Antimalarial Resistance Network (WWARN), a collaborative data platform that proved it is possible to generate policy-changing scientific evidence from pooling and reusing data.  

We are based at the Centre for Global Health Research at the University of Oxford, with hubs in Africa, Australia and South-East Asia.  International research collaborations are integral to what we do: our collaborative network includes the World Health Organization (WHO), the Indian Council for Medical Research, the Wellcome Major International Programmes, Drugs for Neglected Diseases initiative (DNDi), Medicines for Malaria Venture (MMV),  Global Research on Antimicrobial Resistance (GRAM), and more.  

Explore our collaborations

Clinical trial and observational study data are expensive to collect, difficult to maintain, and hard to govern.

When data is locked away in archives or probed in isolation, it is less effective in tackling real-world health challenges - especially for poverty-related infectious diseases or neglected tropical diseases, where data is scarce.  

When data is shared in repositories with no requirement for documentation or findability, or when data is fully anonymised, data reuse can be as low as 4%. 

This cannot be the intention of funding organisations or journals who expect data to be made available as a global good, to be squeezed for every bit of useful knowledge.  

At IDDO, we enable meaningful data reuse by providing the methods, infrastructure and governance needed to share scientifically useful data.  

We do this by working with global scientific communities to identify important questions that historical data can answer, if pooled together. This bottom-up approach enables as much as 90% of the data contributed to the IDDO repository to be reused. 

Find out more about our strategic direction 

Across our twelve disease themes, we turn data into evidence for better policy and treatment guidelines. 

We do this by:

1. Defining key questions and research gaps 
   We work as equal partners with collaborators worldwide, to identify key scientific issues that have the potential to translate to new evidence and health policy that will better the lives of people affected by poverty-related infectious diseases.
2. Gathering individual patient data (IPD) 
   We bring together individual participant data (IPD) from relevant studies. Unlike aggregate results, IPD’s granular information enables scientists to answer new research questions using pooled data analyses, compare across studies, focus on subgroups, and generate stronger evidence.
3. Curate and standardise data
   • Pseudonymise rather than fully anonymise patient data — this makes governance more complex, but it preserves key scientific detail essential for high-quality analysis
   • Harmonise data to international standards (CDISC) required or recommended by regulatory agencies such as the US Food and Drug Administration (FDA), Japan’s Pharmaceuticals and Medical Devices Agency (PMDA), China’s National Medical Products Administration (NMPA) and the European Medicines Agency (EMA)
   • Preserve the context of each dataset so it remains usable long after a study is complete
   • Store data securely to prevent loss years after study completion
   • Make data freely available to any non-profit researcher
4. Support robust data governance
   Because pseudonymised data is more scientifically powerful, our governance processes are especially important. With more than 15 years’ experience, we successfully:
   • Balance the rights of data contributors while enabling data reuse (see more on data governance)
   • Ensure compliance with complex legal and ethical guidelines (including EU GDPR)
   • Provide a collaborative model where contributors can take part in research and receive credit for the use of their data
5. Analyse data and publish results 
   Our scientific expertise enables rigorous analysis, and we publish findings in leading peer-reviewed journals.
6. Translate evidence into policy 
   We share results and clear recommendations with health committees, governmental ministries of health, and policymakers, to ensure evidence leads to better treatment strategies.
7. Monitor and build capacity to build longer-term sustainibility 
   We provide resources and tools that enable better data collection and analysis, and help build  capacity  in disease-endemic countries through training to support future self-sustainability.  

Explore our research themes

Email us at info@iddo.org