Delving into the Latest Updates on Leprosy Research Initiative with Synapse

Overview

Erythema Nodosum Leprosum (ENL) is a painful, debilitating complication of leprosy. Patients often require high doses of corticosteroids for prolonged periods. Thalidomide is expensive and not available in most countries. The use of corticosteroids for long periods is associated with adverse effects and mortality. It is a priority to identify alternative agents to treat ENL. Methotrexate (MTX) is a cheap, widely used medication which has been reported to be effective in ENL resistant to steroids and thalidomide.

Start Date15 Jan 2023

Sponsor / Collaborator

London School of Hygiene & Tropical Medicine

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100 Clinical Results associated with Leprosy Research Initiative

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0 Patents (Medical) associated with Leprosy Research Initiative

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Literatures (Medical) associated with Leprosy Research Initiative

Leprosy Review

Strategies for leprosy services in low-endemic areas and countries

Author: Trienekens, Suzan C. M. ; Mieras, Liesbeth ; Quao, Benedict ; Fiebig, Lena ; Mukhier, Monty ; Fenenga, Christine ; Saadi, Asma ; Vedithi, Sundeep Chaitanya ; van der Grinten, Emmy ; Nobre, Mauricio Lisboa ; Rao, Pemmaraju ; van Brakel, Wim H. ; Ouss, Oleg ; Warne, Geoff ; Singh, Rajni Kant ; Schoenmakers, Anne ; Kreibich, Saskia ; Timalsina, Amar ; Cambau, Emmanuelle ; Ebenso, Jannine ; Chukwu, Joseph ; Hambridge, Tom ; Groenendijk, Jozefien ; Tantivongsakij, Jumpol

Tropical Medicine and Infectious Disease

Meaningful Engagement of Persons Affected by Leprosy in Research: An Exploration of Its Interpretation, Barriers, and Opportunities

Article

Author: Oraga, Joshua ; de Groot, Laura ; Duck, Mathias ; van ‘t Noordende, Anna T. ; Peters, Ruth M. H. ; Rai, Sarju Sing ; Veldhuijzen, Nienke

Despite the growing interest in public and patient involvement in research, best practices in the leprosy context have yet to be explored. This mixed-method study aimed to explore the interpretation, barriers and opportunities of meaningful engagement of persons affected by leprosy in research through: (i) an exploratory phase consisting of key informant interviews with experts in public and patient involvement (n = 2) and experts-by-experience (i.e., persons affected by leprosy; n = 4), and (ii) an in-depth phase among leprosy researchers consisting of an online survey (n = 21) and key informant interviews (n = 7). Qualitative data were thematically analyzed. Basic descriptive statistics were used to summarize the survey data. Key informant interviewees unanimously agreed to the importance of engagement in research. Survey results indicated that the level of engagement differed across research stages. Identified barriers included a lack of skills for or awareness of engagement among both experts-by-experience and researchers, stigma and limited time and resources. Opportunities included capacity strengthening, creating a shared understanding, building rapport, and establishing a safe environment. In conclusion, this exploratory study emphasized the importance of engagement of experts-by-experience in leprosy research and identified ways forward that include, but are not limited to, the acknowledgement of its value and creating a shared understanding.

Leprosy Review

Improving funding transparency to advance leprosy research

Author: Tucker, Andie ; Scollard, David ; Cassard, Caroline

100 Deals associated with Leprosy Research Initiative

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100 Translational Medicine associated with Leprosy Research Initiative

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