Data platform will play a vital role in future VL research
A new publication authored by IDDO’s Visceral Leishmaniasis (VL) Scientific Advisory Committee sets out a research agenda for VL, and describes how IDDO established and developed a data platform that enables data reuse for crucial historical data.
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