• Grant: LRI Regular Grant
• Budget round: 2025
• Research priorities: Stigma and discrimination
• Country: India, Nepal
• Project no.: FP25\12
• Budget: €225,295
• Duration: April 2025 - March 2028
• Status: Ongoing
• Co-funding partners: St Francis Leprosy Guild

Project coordination
The Leprosy Mission Great Britain

Partners
The Leprosy Mission Trust India
The Leprosy Mission Nepal
University of Sussex (Brighton & Sussex Medical School)

Aim: The main aim of this Participatory Action Research study is to develop a replicable process through which persons affected by leprosy with anxiety and depression co-produce local community-based mental health interventions in India and Nepal.

Full project title: Working towards mental health Recovery Among Persons affected by leprosy (WRAP): A feasibility study in India and Nepal

Project summary

Physical symptoms and complications of leprosy, such as visible changes to the skin, chronic pain, and ulcers and wounds which can lead to physical impairments, have a negative effect on the mental health of those who are affected by the disease. This negative effect on mental health is often exacerbated by the exclusion and stigma people affected by leprosy experience in their daily lives. Not being allowed to leave one’s house, losing a job or being denied the opportunity for education or marriage may result in feeling lonely, anxious or depressed, even suicidal. It is not surprising, then, to see that most studies find a significantly higher prevalence of depression and anxiety among persons affected by leprosy, in addition to low self-esteem and low quality of life.

While there is plethora of interventions that target anxiety and depression originating from the Global North, some of which are available globally, there is a gap in understanding and identifying local mental health idioms using local cultural perspectives and vocabularies, and in developing and evaluating locally-rooted interventions, for and with people affected by leprosy. This study aims to improve the lives of individuals affected by leprosy and experiencing mental health issues, by empowering them through the co-production of locally-rooted, meaningful and effective interventions.

To that end, the research team will work with persons affected by leprosy in India and Nepal to explore whether it is feasible to develop together a mental health intervention that is replicable in other similar contexts. First, persons affected by leprosy will decide on what ‘good’ mental health means for them, identify the factors that contribute to good mental health, and design interventions that may lead to good mental health. These interventions will be assessed to see whether they make a positive difference for the mental health of people affected by leprosy.

The immediate purpose of the study is to make those interventions that work available for the use of other people affected by leprosy in other similar communities. However, every community and culture is different; therefore it is more important to give the tools to person affected by leprosy in other communities to produce interventions that are appropriate and efficient in their own contexts. With that in mind, the broader purpose of the study is to capture the entire process of how interventions can be produced by persons affected by leprosy, so that the process can be replicated in other places. To that end, the study will also produce guidelines on how other researchers and communities can produce their own interventions that work in their own contexts.

• Grant: LRI Regular Grant
• Budget round: 2025
• Research priorities: Diagnostic tests
• Country: Brazil, Canada
• Project no.: FP25\10
• Budget: €78,863
• Duration: April 2025 - October 2027
• Status: Ongoing
• Co-funding partners: Turing Foundation

Project coordination
Pontifícia Universidade Católica do Paraná

Partners
McGill University Health Centre - RI-MUHC
Universidade Federal do Goiás - UFG
Fundação Hospitalar Alfredo da Matta, FUHAM
Universidade Federal de Uberlândia - UFU

Aim: The study aims to advance the understanding of the genetic component controlling host susceptibility to leprosy in a high-endemic setting, combining a hypothesis-free and a hypothesis-based approach.

Full project title: Genome-wide association study of leprosy per se and disease recurrence in a high endemic country

Project summary

Leprosy is a chronic infectious disease caused by Mycobacterium leprae, a microbe that invades cells of the skin and nerves. The development of leprosy is highly dependent on the genetic constitution of the human host, as initially demonstrated by observational studies involving families and twin pairs, for example. With the advance of technology, studies using DNA successfully identified various candidate genes involved in the control of leprosy itself and clinical features of the disease, such as the clinical type of leprosy and the occurrence of leprosy reaction. However, very few of these studies were designed to pinpoint the true causative genetic variants of the disease. Furthermore, the recurrence of the disease is a phenomenon that has been little explored and has a major impact on leprosy support services.

The research team has already identified a large number of genetic variants with a possible strong impact on leprosy; also, researchers described what can be a hypersusceptibility genetic profile in patients who had a recurrence of the disease. The next step is to validate these results in different populations. In this project, the researchers propose to search for new leprosy-associated variants, as well as to validate these variants using a large Brazilian population sample. As a result, it is expected to describe variants that might help to unravel the exact nature of host genetic control of susceptibility to leprosy. The impact of these variants will be analysed together to describe a profile that may lead patients to develop leprosy more than once. Finally, the research team hopes to contribute to the creation of a genetic panel that can be used to monitor patients and contacts, mainly living in endemic areas.

• Research priorities: Stigma and discrimination
• Country: Ethiopia
• Project no.: FP24\11
• Budget: €136,780
• Duration: June 2024 - May 2026
• Status: Ongoing

Full project title:
Addressing Leprosy Trauma Using the Traumatic Stress Relief Programme: An exploratory Trial with Persons with Lived Experience in Addis Ababa, Ethiopia

Project coordination
Erq Ma’ed Media and Psychological Services

Partners
Bogazici University
All Africa Leprosy Rehabilitation and Training Centre Hospital (ALERT)
The Global Initiative for Stress and Trauma Treatment
The University of Manchester
The Leprosy Mission Ethiopia
The Leprosy Mission England and Wales

Aim: The study aims to expand on our understanding of mental health difficulties of persons affected by leprosy and extend the interventions available for them. A Traumatic Stress Relief (TSR) programme will be used, which is known to reduce the trauma treatment gap and make feasible, acceptable, safe, early trauma stress relief available in LMICs.

Project summary
Mental health difficulties are a significant public health concern in many countries. The treatment of mental health difficulties can be more complex when the individual is also going through physical difficulties such as leprosy. For example, people with leprosy are more at risk of experiencing multiple difficulties both physical and psychological.  As a result, these individuals cannot recover fully, especially among the low-income and socio-economically disadvantaged communities. However, it is essential that proposed treatments are shown to be cost-effective and accessible to all groups.

The proposed project aims to test the feasibility and acceptability of apeer delivered intervention “Traumatic Stress Relief (TSR)” programme for treating stressed people who are affected by leprosy in Ethiopia.

This research will be carried out in the principal areas with a high density of leprosy in Ethiopia. Research assistants will advertise and invite participants to take part and tell them all about the study. Posters will be also placed in local community groups, mosques,  churches and local stores to advertise the study to a wider audience. When participants join the study, they will be asked about their symptoms, how much depression and other psychosocial difficulties are interfering with their life and which health services, or other support services, they need to use. Furthermore, what people found helpful and unhelpful about the programme will be explored by interviews.

At the end of the research project the acceptability of the programme will be determined. The findings will be summarised in a delivery manual and, if found effective, this can be freely used by other centres who might wish to deliver the same package in their centres. Guidance will be also provided on the cultural adaptation process to allow the package to be adapted for other groups.

• Grant: LRI Regular Grant
• Budget round: 2024
• Research priorities: Transmission
• Country: India
• Project no.: FP24\12
• Budget: €200,466
• Duration: May 2024 - April 2027
• Status: Ongoing
• Co-funding partners: Turing Foundation

Full project title:
Holistic investigation for environmental presence of Mycobacterium leprae and its implications in leprosy transmission through WASH and One Health approach

Project coordination
LEPRA Society- Blue Peter Public Health and Research Centre

Partners
American Leprosy Missions
Society of Leprosy Affected People (SLAP)
Stanley Browne Research Laboratory
National Animal Resource Facility For Biomedical Research, India
ICMR-National Institute of Research in Tribal Health, India
ICMR-National Animal Resource Facility For Biomedical Research, India
District NLEP Office, Hyderabad

Aim: The study aims to investigate and compare the association between the environmental presence of M. leprae in animals, water, and wastewater, in leprosy cases and healthy controls, with reference to the reported WASH behaviour.

Project summary

India accounts for more than half of the global leprosy burden. Leprosy is a chronic communicable disease associated with sensory and functional impairment leading to physical and psychological consequences. Person to person spread of Mycobacterium leprae the germ causing leprosy is yet to be fully understood. The proposed study aims at understanding the role of water and livestock in the spread of leprosy in low resource and high leprosy burden settings in India. Since the human dwellings where leprosy occurs have also been associated with poor living conditions, it was thought that bringing awareness to the communities on appropriate water safety, hygiene and sanitation conditions could potentially help in improving their health conditions in general and for leprosy in specific. The research study also envisages understanding the disease spread through a comprehensive approach of human, animal and environment context which is sort of One health. The research plan involves the communities affected by leprosy who will be empowered in decision making for study designing and implementation, in addition to making it a livelihood opportunity as the trained community resource persons. The research team develops standard procedures for better hygiene practices for safe handling of the livestock. Proposed research study ultimately aims at finding the potential link between poor water hygiene practices, presence of live germs in potable or sewerage water and/or livestock with occurrence of leprosy cases. The findings from this study help inform the government policy makers and scientists to formulate appropriate preventing strategies for leprosy through better understanding its spread. Since the study is being conducted with the active involvement and empowerment of the communities, the study findings will be well internalised and the best practices well adhered by the communities.