With limited commercial interest in neglected tropical diseases research, collaborative approaches are needed to ensure that patients have access to safe and effective treatment.
We are grateful to all our collaborators who are committed to improving the lives of VL patients. The VL data sharing platform is founded upon a collaborative framework that brings together partners including individual researchers in VL endemic regions and leading global research institutions in different parts of the world.
The platform consists of scientific coordination, data management and communications and advocacy teams from IDDO and other partners undertaking their respective responsibilities as below:
Data contributors form the backbone of the VL data sharing platform. We are grateful to VL researchers from VL endemic regions in Eastern Africa and the Indian-subcontinent who, through their hard work and dedication to providing better medication for VL patients, have made this data sharing platform a reality.
The VL data sharing platform scientific coordination group are responsible for facilitating pooled data analyses to answer specific and relevant scientific questions arising from the need to improve treatment outcomes.
Their work will be based on the study group model developed by the WorldWide Antimalarial Resistance Network (WWARN), IDDO’s malaria data sharing platform. WWARN has facilitated over 20 collaborative study group pooled analyses. Publications that have resulted from these study groups have provided evidence to improve malaria drug dosing policies for vulnerable patients.
Each VL study group will draw members from interested data contributors, IDDO, the Leishmaniasis East Africa Platform (LEAP) and the Drugs for Neglected Diseases initiative (DNDi), to focus on obtaining specific answers to the study group’s proposed research question.
Data management services are provided by the IDDO and DNDi data management teams based at the University of Oxford and the DNDi Data Centre in Kenya, Nairobi.
The data managers carry out data curation and standardisation procedures using the platform’s sophisticated data handling and analysis applications. The data management team works closely with data contributors and provides support to users in uploading and accessing data in the IDDO repository.
In addition to the valuable contribution made by data contributors, the following institutions have provided initial financial support for the establishment of the VL data sharing platform: