The new partnership, which includes the University of Oxford, Université Paris Cité, the Institut Pasteur, Diamond Light Source and Synchrotron SOLEIL, will unite expertise, infrastructure and data across borders to accelerate diagnosis, treatment and ultimately prevention of major diseases – starting with women’s health, infectious diseases and pandemic preparedness.

IDDO Director Professor Philippe Guérin said the partnership would allow researchers to “understand how infections develop, spread and respond to treatment” by combining “advanced imaging, data and biological science” in new ways.

Professor Guérin (pictured speaking at the launch event) added that bringing together “the technology of two of the world’s most powerful synchrotrons, with the world’s greatest research minds” would help researchers study disease “at an unprecedented level of detail”, driving “innovation in diagnostics and therapies” while strengthening preparedness for future health threats worldwide.

The Health Alliance combines discovery research, clinical expertise, advanced imaging and large-scale data science at national scale. The collaboration brings together Oxford’s strengths in basic science, structural biology, infectious diseases, translational medicine and global health data science; Université Paris Cité’s interdisciplinary health research capabilities; the Institut Pasteur’s leadership in infectious diseases and pathogen biology; and the advanced imaging infrastructure of the UK’s Diamond Light Source and France’s Synchrotron SOLEIL.

Find out more on Nuffield Department of Medicine website. 

IDDO is the first data repository dedicated to infectious diseases that has achieved this standard.

CoreTrustSeal is a non-profit, community-based organisation that assesses repositories against a set of 16 stringent requirements  across organisational infrastructure, data management, and technical security. This independent certification confirms that IDDO meets international standards for the long-term preservation and responsible sharing of research data.

For IDDO, the award recognises over a decade of work building the technical, organisational and governance measures to ensure compliant reuse of scarce data about infectious diseases affecting vulnerable populations worldwide. By bringing together and standardising individual participant data from diverse studies into high-quality curated datasets, IDDO enables researchers to generate new evidence that would not be possible from individual datasets alone.

Professor Philippe Guerin, IDDO Director, said:"Reliable, well-governed data is essential to making sure that we use scarce and sparse data to its fullest, producing strong evidence that results in improved treatments for patients. This certification recognises the strength of the systems that underpin IDDO’s work, and our commitment, in partnership with our collaborators, to responsible open science for global health impact."

Dr Emmanuelle Bitoun, who leads IDDO operations and oversees  governance, added: "For contributors, depositing their data into a certified trustworthy repository like IDDO not only means secure, long-term storage and access  to  source as well as accompanying meta data, but also improves citability and continued credit. Our work assigning digital object identifiers (DOIs) to datasets means that both the data originators and research funders continue to be recognised for their work.

"We embed the FAIR guiding principles in all our work, which means making research data findable, accessible, interoperable and reusable, through the IDDO repository."

CoreTrustSeal certification places IDDO among a select group of data repositories worldwide that demonstrate excellence in data stewardship. Achieving this milestone further strengthens IDDO’s role as a trusted platform for sharing and reusing data to improve treatment and control of infectious diseases.

Fred McElwee from the Economics of Population Health Research Centre, and Andrew Farlow from the Department of Economics at Oxford University, used two individual patient data meta-analyses from the WorldWide Antimalarial Resistance Network (WWARN) to illustrate this approach. 

Both of these studies analysed pseudonymised individual-level data from multiple existing clinical and observational studies, brought together into a curated, harmonised data repository. This approach is distinct from standard aggregated meta-analyses of published data, which do not have access to the individual-level data. The results of these studies helped bring about changes to malaria treatment guidelines for children, which had previously relied on a few and scattered clinical studies. 

Financial incentives for developing medicines at accurate dosing are often weaker for diseases of poverty, especially for paediatric populations: the ability to pay for drugs is limited, markets are smaller, and intellectual property laws may be weak or poorly enforced. 

“Carrying out a prospective clinical trial, whether it’s testing a new drug, formulation or dosing, can be expensive, especially in babies and children” says Fred McElwee, first author of the study. “There are, to some extent, financial and regulatory incentives for pharmaceutical companies to perform these studies for drugs sold in high-income countries. But the situation is more challenging for drugs which treat diseases that mainly affect poorer regions.” 

Government and philanthropic funders have instead attempted to plug this gap, with collaborative product development partnerships such as the Medicines for Malaria Venture (MMV) and Drugs for Neglected Diseases Initiative (DNDi) (both WWARN/IDDO collaborators). Economists categorise these efforts as ‘push mechanisms’, which provide direct incentives for investment in drug research and development, and ‘pull mechanisms’ that incentivise commercial drug developers by funding the purchase of medicines (for example, through advanced market commitments). 

Andrew Farlow says “Data sharing offers a third, complementary approach: investments in collecting, curating and then analysing individual-level patient data can be thought of as a pulley mechanism. Just as a pulley can amplify a small force to lift a heavy weight, data sharing maximises the utility of data that already exists, thus leveraging comparatively small investments into evidence that goes on to create large benefits for global health.”

Previous WWARN individual patient data meta-analyses have generated policy-changing scientific evidence, while still being an order of a magnitude cheaper than primary data collection. The team are now working on generating more precise estimates of these costs, to be reported in future publications. 

Dr Farlow adds, “Efforts to generate good evidence, to base paediatric dosing guidelines on, must also be complemented by affordable access to formulations that are appropriate for babies and children.”

IDDO Director and co-author Professor Philippe Guerin says, “It takes time and effort to pool, curate and harmonise often heterogeneous datasets from multiple investigations, all using different standards. But the result is a much larger, richer dataset which enables us to spot patterns in populations too small to be seen in individual studies. 

“The IDDO data repository can catalyse research that helps to ensure all patients, including babies and children, are given the right dose of drug for them, in the right form, and at the right time. This is the fruit of a collective effort”

The IDDO data repository currently makes over one million individual patient records available for reuse by the infectious disease research community, to generate the missing evidence that improves treatment and outcomes for patients. 

Read the full paper published in BMJ Open

The systematic review, Prognostic models predicting clinical outcomes in patients diagnosed with visceral leishmaniasis: a systematic review, has been published in BMJ Public Health.

VL is a neglected tropical disease that is transmitted by female sandflies. The disease affects impoverished regions in the Indian sub-continent, East Africa, the Mediterranean basin and South America. It is the most severe of the three forms of leishmaniasis and is almost always fatal without treatment. 

IDDO’s researchers identified eight studies, published between 2003 and 2021, which together described 12 prognostic models that were developed in the context of Brazil or East Africa, that are used to predict the clinical outcomes for VL patients.

This review is the first comprehensive overview of these existing models and can support policymakers in evaluating and incorporating prognostic tools into patient management, as well as help clinicians assess their relevance to their own patient populations.

It can also be used to identify key evidence gaps and to determine whether the available data are better suited to developing new models or to externally validating and updating existing ones.

However, the authors also highlight limitations of these models, which were judged to have a high risk of bias. This means that all model predictions and performance measures should be interpreted with caution.

The study’s first author Dr James Wilson said: “None of the models we found were developed for populations in the Indian sub-continent, even though this region historically carried the highest global burden of visceral leishmaniasis.

“As elimination programmes continue in the Indian sub-continent and East Africa, these gaps highlight where new model development should be prioritised. Our findings can help clinicians and policymakers assess whether existing models are applicable to their own settings.”

Read the full research paper

Find out more about our work in VL 

Juan is one of two fellows who joined us in 2025 – find out more about Dr Nathalie Beloum, our other WHO/TDR fellow the same year.

Juan is a medical doctor from Colombia and an epidemiologist at Universidad del Valle, with extensive experience in public health and infectious disease research. He is a qualified field epidemiologist, with specialist training from the National Health Institute of Colombia, supported by the CDC and TEPHINET. 

Here Juan shares why he applied for the WHO/TDR Fellowship, the projects he is working on, and how he hopes this learning will shape his career and benefit his home institution and colleagues back in Colombia.

You are a researcher as well as physician, tell us more about your work.

In 2021, I was a research assistant for the WHO Solidarity Trial Vaccine Project within the Centro Internacional de Entrenamiento e Investigaciones Médicas (CIDEIM), a Colombian private non-profit organisation which conducts research on infectious diseases.  I went on to work on other CIDEIM projects, including collaborating with the Valle del Cauca Health Department (first administrative geographical division) to evaluate the epidemiological and microbiological behaviour of the dengue virus in Valle del Cauca, a diverse region in western Colombia. 

I carried out biostatistical analyses of patient data for a US National Institute of Health-funded study on the prevalence of sexually transmitted infections in minority populations, specifically transgender women in Cali (the capital city of Valle del Cauca in Colombia). I identified factors associated with malaria recurrence in Colombian Indigenous and Afro-Colombian populations in Pueblo Rico, Risaralda, using epidemiological surveillance data. 

In addition to research, I was a medical assistant in a high-complexity institution in Cali, Colombia. I have a special interest in and engage in activities related to stewardship, antimicrobial resistance, and clinical epidemiology.

Why did you apply for the TDR/WHO Fellowship?

I have always been concerned with the significant impact of infectious diseases, particularly on vulnerable populations in Colombia. This includes sexually transmitted infections, arboviruses and parasitic diseases such as malaria. The information physicians collect daily, or that is already available, can really help identify patterns and conditions related to pathogen transmission in a community, and they can also address gaps in timely disease detection.  During the COVID-19 pandemic, I participated in many meetings about how to identify, prevent, mitigate and predict the disease’s impact. The constant flow of information and data underscored the need to use these effectively to evaluate existing interventions and identify indicators for more effective interventions. I now want to strengthen my applied expertise in using interdisciplinary data analysis tools to address public health problems with high social impact.

This is because routine surveillance data can be quite powerful – they’re mostly used to generate descriptive reports highlighting endemic channels and unusual trends, but inferential analyses of this data can identify critical risk factors needing immediate intervention, as well as uncovering important research questions to explore over the longer term. 

I want to use this fellowship so that I can use data from my country’s public health surveillance systems fieldwork to evaluate structural interventions processes for diseases such as malaria, leishmaniasis and dengue. By using new analytical models, tools and data analyses, I hope to evaluate public health research gaps, and identify future research, using continuously updated, responsive data. I also plan strengthen my skills in data science statistical modelling and reproducible research. My goals are centred on: 

• Learning how large international collaborations manage and analyse complex datasets
• Building bridges between IDDO and other collaborative groups with institutions in Colombia

What projects will you be working on during your time with IDDO?

My first project is on visceral leishmaniasis (VL) in Brazil, one of the countries most affected by this neglected tropical disease. VL is severe and often fatal if not treated promptly, and many of the affected patients live in remote or underserved areas. For this project, we are building a retrospective cohort using SINAN, Brazil’s national surveillance system. This includes all confirmed VL cases between 2007 and 2023. We are interested in the delay between symptom onset and the start of treatment, and how this delay is associated with the risk of death.

Public health bodies are generally aware that delaying VL treatment is detrimental, but they don’t have any specific information to guide them.

We want to find out how treatment delay differs across the population and varies by clinical and epidemiological variables such as geographic region, ethnicity, age, sex, etc. Identifying which groups are most affected by long delays between symptom and treatment will provide robust, region-specific evidence that Brazilian health authorities can use to improve case-finding, referral pathways and clinical management for VL.

Our analyses aim to answer questions such as when the delay becomes particularly hazardous, how the risk of death increases with each additional week of symptoms, and which groups are most affected, providing actionable insights that health authorities can actually use in their health policy decisions. 

My second project evaluates artemisinin combination therapy (ACT) for children under five who have uncomplicated P. falciparum malaria, especially with higher parasite load. We already know that malaria treatments are more likely to fail in patients with very high parasite loads, and this may contribute to the spread of antimalarial resistance. 

So here we are pooling individual patient data from many ACT clinical trials of uncomplicated P. falciparum malaria. We will use different methods and statistical models to unpick relationship between parasite density and the risk of malaria symptoms coming back. We aim to identify a parasite-density threshold above which patients have at least a 10% risk of treatment failure, and to estimate how common such high-risk infections are across different transmission settings and age groups. 

A key issue is that many high-risk patients are currently unrecognised. ACTs are now part of standard treatment for uncomplicated malaria, but we still don’t fully understand how it works with extremely high parasite densities. By defining a clear parasite density threshold associated with high failure risk, we can help clinicians identify these high-risk patients who need more than the usual regimen. The WHO-defined threshold is that treatment failures exceeding 10% warrant consideration of new therapeutic options for standard treatment. 

Both of these projects connect advanced data analysis with practical questions in real health systems. They both also tackle diseases that are very prevalent in many low- and middle-income countries. By transforming surveillance and clinical trial data into new evidence, both of these projects support better, earlier and more equitable patient care.

What are you most looking forward to over the next year?

I’m most looking forward to a mix of learning, connecting and settling in. Professionally, I’m excited to deepen my skills in advanced epidemiological methods, data science and statistical modelling, and becoming much more confident with large, complex datasets. I’d like to take full advantage of the seminars, workshops and course offered by University of Oxford - not just at IDDO but across the University. I am looking forward to learn new techniques and see how people from different disciplines think about infectious diseases and data

I’m also keen to get better at English, particularly in scientific writing and everyday chats, so I can share my ideas more effectively and engage more fully in discussions and collaborations. I’m also excited about the possibility of forming connections with mentors, colleagues and others. For instance, I’ve had the chance to meet Colombians working at the Pandemic Science Institute, with diverse roles and viewpoints on public health and epidemiology. I think this could really help me move towards new goals and propose ideas for the future. 

Lastly, I’m looking forward to feeling more at home in Oxford: getting to know the city better, discovering my favourite spots to read or work and finding a good balance between my intense academic life and enjoying this unique experience.

How will this benefit your career and home institution?

This Fellowship will strengthen my skills in advanced epidemiological methods, data processing and analysis, and using innovative tools for large and complex datasets. It will give me hands-on experience in applying these methods to real-world infectious disease problems, and in working within an international, multidisciplinary research environment. These are essential skills for me to become a more independent researcher, able to design, lead and communicate data-driven projects, and to mentor others too. Overall, all of this helps me make a more effective contribution to evidence-based decision-making in infectious diseases and public health.

I plan to apply and share what I learn both within and beyond CIDEIM. The knowledge and experience gained during the Fellowship will help strengthen the Epidemiology and Biostatistics Research Unit, particularly in data management, analysis and the better use of existing data resources. By incorporating advanced epidemiological methods, deepening on data analysis techniques into our research protocols, we will be able to generate more robust evidence to inform interventions.

Together with this unit and the Research Promotion and Development Unit, I intend to disseminate what I have learnt through workshops, seminars and short courses. These capacity building efforts will enhance our institutional capabilities and help foster a culture of innovation, continuous learning and collaboration.

What is your first impression of Oxford?

I was struck by Oxford’s remarkable tranquility despite its academic vibrancy. Its many bicycles and pedestrians prompted a shift in my street crossing habits! Its efficient public transport system and the widespread use of buses means that everybody can get around easily regardless of their status, offering a sense of safety and quiet. 

Coming from a warm, tropical climate, I’ve also been amused by how quickly the weather can change here. I’ve learned that leaving the house without an umbrella is something that never you must do! Another funny thing for me is how early many places close compared with Colombia; I’m used to doing things later in the evening, so discovering that shops and cafés may already be closing while it’s still light outside has been a small cultural shock. At the same time, I enjoy the mix of very old buildings and young students everywhere. I would like to explore more of Oxford beyond the main tourist spots: small cafés where people go to study or chat, quiet corners by the river, and the less known colleges or green spaces where you can sit and read. I’m also curious to discover more of the cultural life here local markets, music, maybe a bit of theatre and to understand better how the city changes with the different terms and seasons.

On a personal and professional level, I want to explore more of the academic environment: seminars in other departments, public lectures, and opportunities to meet people working on different aspects of global health and data science. I think these spaces are a great way to get new ideas, make connections, and feel part of the wider Oxford community, not just the place where I work.

And finally…

Looking back on the whole process—from planning the application to now being in Oxford—it feels like a long, thoughtful journey that suddenly became very real. Putting together the application made me pause and think about my work in Colombia and what I truly wanted to achieve in the next part of my career. Once I was selected, the focus shifted to more practical questions like visas, flights, accommodation and how to organise my responsibilities at home so I could make the most of this opportunity without leaving anything behind.

Arriving in Oxford was both exciting and a bit overwhelming: a new city, a new institution, new colleagues and, of course, a very different climate and pace of life compared with Colombia. What has really helped is the warm welcome from the team at IDDO and the feeling that people are genuinely interested in my background and where I come from. Little by little, I’m learning how things work here, from the bus routes to the coffee spots and seminar schedules.  I am starting to build a routine that combines work, study and enjoying the city. For me, this year is not only about technical training, but also about adapting to a new environment, building connections and growing personally and professionally.

The VL data hosted in the IDDO platform can play a vital role furthering knowledge on treatment safety and efficacy for this neglected tropical disease, say researchers.

The paper, The development of a global research agenda and individual participant data platform for Visceral Leishmaniasis: Challenges and future opportunities, has been published in the journal Parasites & Vectors, and sets out the key steps in setting up and developing the platform, its challenges, and how it can support future research.

The WHO recognises VL (also known as Kala azar) as a neglected tropical disease. The disease mostly affects poorer populations, and has historically received too little investment in research, drug development, and health services.

IDDO VL Scientific Advisory Committee member Professor Shyam Sundar, from the Banaras Hindu University, India, said: “Visceral leishmaniasis (VL) is a devastating disease that is fatal without treatment. With limited investment in research and drug development, current therapies remain decades old. The IDDO VL platform was established as a shared, inclusive resource—underpinned by an equitable governance framework—to help address this critical gap. It provides a vital foundation for generating new evidence and supporting any future drug development. At its core, the platform champions collaborative science; enables researchers worldwide to ask pressing public health questions; maximises the value of existing datasets, and promotes data reuse to accelerate progress.”

Professor Sundar is a leading VL authority who has been at the forefront of drug development in VL and formulation of global treatment policy.

IDDO’s Dr Prabin Dahal, who leads the IDDO VL Platform, said “Historical data is a potential untapped resource to answer crucial questions about VL that can help provide the evidence needed for better patient treatments. It can uncover information in the same way as a clinical study, but is much, much cheaper. IDDO has been privileged to receive a global support from remarkable VL scientists to further our understanding on different aspects of treatment safety and efficacy, which would have not been possible in a standalone trial.”

This is where IDDO played a pivotal role - by collaborating with scientists and researchers in endemic countries, a VL data platform was established. The platform development involved several critical steps: reviewing the literature to identify relevant therapeutic studies; collaborating with the research community and stakeholders to develop a research agenda and identify priority questions; and inviting the researchers to contribute individual participant data. 

Prof Ahmed Mudawi Musa, a globally recognised expert on VL from the University of Khartoum, Sudan, and key figure in control of the disease in East Africa, said: “One of the key challenges in developing the IDDO VL platform was the difficulty of retrieving data from older studies, many of which remained in paper records. Despite this, the platform now hosts data from more than 50 VL and PKDL studies and almost 15,000 patients, reaching a critical mass to answer pressing public health questions. It stands as both a vital research tool and a neutral venue for archiving data for the future.”

IDDO has developed the VL data platform in collaboration with researchers from Indian sub-continent, East Africa, South America and the Mediterranean region. IDDO’s team curated the data into a standardised format, provided a transparent data governance framework, and worked with the disease’s scientific community through an equitable data ownership model where investigators who generated the primary study remain the data controller and are engaged in subsequent scientific projects when their shared data is utilised.

Dr Sauman Singh-Phulgenda, who led the development of the IDDO VL data platform, said: “We hope our experiences and description of the underlying processes of the VL platform development will provide insights to colleagues working in other scientific disciplines. This is a remarkable effort from the global VL community and we remain grateful for the time and resources dedicated by the VL research community towards this common cause.”

In the Indian Subcontinent, the disease is in elimination and post-elimination phases. The burden has now shifted to East Africa, where transmission remains high and there is an expressed need for new drug regimens for the management of VL and PKDL. But maintaining the necessary financial and political commitments to achieve and sustain complete elimination remains challenging- like many NTDs, VL research is constrained by limited funding and recent drug development has involved partnerships between not-for-profit organisations and the pharmaceutical industry. 

About Visceral Leishmaniasis

VL, also known as kala-azar, is transmitted to humans through bites from infected female phlebotomine sand flies. If left untreated, it is fatal in 95% of cases. Globally, it is estimated that there are up to 22,000 new cases of VL each year which occur in Brazil, Ethiopia, India, Kenya, Somalia, South Sudan and Sudan.

As of Jan-2025, the IDDO VL platform is the largest global data bank for this disease, with harmonised records from nearly 15,000 individual patient records from over 50 studies. 

Find out more about accessing the VL data

Read the full paper: The development of a global research agenda and individual participant data platform for Visceral Leishmaniasis: Challenges and future opportunities

Dawit Getachew Assefa, based at Dilla University, Ethiopia, joined IDDO in 2024 for a 12-month placement as part of the WHO/TDR Postgraduate Research Fellowship.  He worked on projects across visceral leishmaniasis and malaria. 

Here he talks about his experience on the Fellowship programme; the benefits to his career, as well as his home institution, colleagues and university students in Ethiopia.