Visceral leishmaniasis (VL)
About VL
Visceral leishmaniasis (VL) is a debilitating neglected tropical disease (NTD). Left untreated, it is fatal in over 95% of cases. Each year, it affects an estimated 50,000 to 90,000 people, mostly in the world’s poorest communities.
There is no single treatment for VL that is universally effective, safe, affordable and practical in the field: the World Health Organization (WHO) recommends different regimens in the Indian subcontinent and eastern Africa, reflecting variations in regional treatment outcomes.
Treatments must also be adapted to patient groups such as children, people who are malnourished, and those living with HIV. But optimising treatment and supporting new drug registration is challenging - VL trials enrol relatively few patients, and they need to meet specific eligibility criteria in many different locations.
Like many diseases of poverty, decisions about VL treatment are often based on limited evidence. To give patients the best chance, researchers and policy-makers need access to all available global data to enable robust analyses and strengthen our understanding of how to fight this infection.
Find out more about VL in the WHO’s VL factsheet – Leishmaniasis
What we do
We work with the global VL research community to bring together clinical study data and generate evidence to improve VL treatment outcomes and save lives. We carry out pooled analyses of individual participant data (IPD) to answer the research questions most important to the VL community, as endorsed by IDDO’s VL Scientific Advisory Committee.
we do this by:
Maintaining an ever-growing VL database of over 10,000 individual patient records – available for free, to any nonprofit researcher across the world. All of the data in IDDO’s repositories is harmonised to international standard (CDISC STDTM) recognised by international regulatory agencies. Access data
Maintaining the VL Surveyor: With data from over 150 published trials, our VL surveyor is an open-access interactive tool that allows you to map VL clinical trails and visualise the global research landscape for VL. It is based on our periodically updated systematic review. Use the VL surveyor
Bringing together VL study groups: collaborative research partnerships with scientists worldwide, who pool data and carry out individual participant data meta-analyses, answering key questions to better support VL patients. Collaborate with VL study groups
Guiding the global VL research agenda
Governance
The IDDO visceral leishmaniasis theme’s scientific direction is led by an independent VL scientific advisory committee, made up of internationally recognised experts in VL research, policy and funding. Explore the VL Scientific Advisory Committee
An independent IDDO board and the IDDO Secretariat oversee all of IDDO’s activities – find out more about IDDO’s governance
We encourage data contributors to delegate data access decisions to an independent data access committee, chaired by the World Health Organization Special Programme for Research and Training in Tropical Disease (WHO TDR) though data contributors can also choose to make decisions on access to their data themselves. Explore the IDDO data access committee
Questions
Email us at info@iddo.org