VL experts attend IDDO-DNDi symposium ahead of IEC-VL conference 2018
IDDO and the Drugs for Neglected Diseases initiative (DNDi) hosted a symposium for Visceral Leishmaniasis (VL) experts to discuss the benefits of establishing a global VL data platform and refine a research agenda that will explore key scientific questions to enhance care for VL patients and affected communities.
27 VL experts from the Institute of Medical Sciences at Banaras Hindu University (BHU), National Vector Borne Disease Control Programme (NVBDCP), PATH, Rajendra Memorial Research Institute of Medical Science (RMRIMS) and the World Health Organization attended the IDDO-DNDi ‘Questions that Can be Answered by Building a Global VL Data Platform: Towards a Research Agenda’ symposium in Delhi on 27 November 2018. The symposium was an opportunity for users of the VL data platform to discuss and refine a research agenda developed by IDDO’s VL Scientific Advisory Committee (SAC).
The research agenda is a key driver in the development of IDDO’s VL data platform. Over the past 2 years, IDDO has been working with the global VL research community to assemble a data platform that aims to collate individual patient data from clinical trials to improve treatment options for patients. By amalgamating and standardising available data, we can maximise the utility of existing resources to address priority questions in VL treatment, create a framework to prospectively assemble future studies, guide optimal data collection and make research progress more efficient.
DNDi is a key player in the VL research community and partner of IDDO* and its VL data platform. Dr Suman Rijal, Director of DNDi’s Regional Office in India, opened the symposium with an introduction to DNDi’s work followed by an introduction of the VL data platform by IDDO’s Director Professor Philippe Guérin. Professor Nirmal K. Ganguly shared his experiences working with global Neglected Tropical Disease data platforms and Professor Jean Claude Dujardin discussed prospectively connecting clinical and genomic data.
The VL SAC Chair Professor Simon Croft from the London School of Hygiene & Tropical Medicine (LSHTM) presented the need for an inclusive research agenda. Dr Suman Rijal and Dr Fabiana Alves, DNDi’s Head of VL Clinical Programme, moderated a session where participants discussed the research agenda, commented on priority areas and offered suggestions on how to engage policy makers and regulators in the VL data platform. VL SAC member Dr Dinesh Mondal, Senior Scientist at the International Centre for Diarrhoeal Disease Research in Bangladesh (icddr,b), also discussed with participants how to engage the scientific and patient community in the VL data platform. Professor Piero Oliaro moderated a final discussion on the research agenda before concluding remarks and next steps outlined by VL SAC member Professor Shyam Sundar from Banaras Hindu University in Varanasi, India.
The symposium provided a platform for a candid discussion to refine and prioritise the research agenda that will direct the utilisation of a global repository of individual patient data and the research questions that could be addressed. A refined version of the research agenda will be published on the IDDO website shortly, inviting input from the wider community.
Participants of the symposium were also present at the International Conference on Innovations for the Elimination and Control of Visceral Leishmaniasis (IEC-VL) conference, 28-30 November 2018. The conference, organised by Jamia Hamdard University, brought together leading scientists from academia, government control programmes, NGOs, and industry around the world to deliberate upon new tools, approaches and implementation routes to control and eliminate VL.
Find out more about IDDO’s VL data platform and DNDi’s work on VL.
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For more information, please contact info@iddo.org
*IDDO’s VL data platform was officially launched during DNDi’s Leishmaniasis East Africa Platform (LEAP) meeting in 2017