Reviewing research priorities of the leprosy research initiative (LRI): a stakeholder’s consultation

Authors: Khazai Z, van Brakel W, Essink D, Gillis T, Kasang C, Kuipers P, Saunderson P, Scollard D, Veldhuijzen N.

Source: Leprosy review. 2019; 90(1): 3-30.

Summary

Leprosy is a neglected tropical disease and although a cure is available, each year over 200,000 persons are newly diagnosed with leprosy and many more suffer from long-term complications, such as disabilities. The Leprosy Research Initiative (LRI) provides competitive research funding for research projects related to one of five research priorities. Five years after its launch in 2013 and with new developments in the field, the LRI consulted a wide range of stakeholders to evaluate its research priorities and to contribute to a wider research agenda. Material & Methods: A mixed methods approach was used in which qualitative methods (enquiry panel, focus group discussions (FGD) and key informant interviews) were followed by quantitative methods (e-survey and Delphi process). The Delphi process was the final phase of the study with the aim to reach consensus on the priority ranking of the research topics. Results: In total, 124 people contributed to the study. Stakeholders consulted included leprosy-affected persons, researchers, health professionals and policy makers. 50% of the participants came from Africa, Asia or Latin America (endemic areas). In total, 84 research topics were identified. The Delphi process resulted in three top five lists of research topics in the categories Zero Transmission, Zero Disability and Zero Discrimination. Discussion: In conclusion, 15 research priorities categorised in Zero transmission, Zero disabilities and Zero discrimination were prioritised in this study. A research priority new to LRI was research into the mental health of persons affected by leprosy. These findings are not only relevant for the LRI – but may also contribute to research agenda setting by others, most notably the Global Partnership for Zero Leprosy.