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Projects

ODESSA (schOol chilDrEn combatting Skin diSeases in Madagascar)

  • Grant: RESILIENTD Grant
  • Research priorities: Social determinants of health
  • Country: Madagascar
  • Project no.: NTD.FP26\109
  • Budget: €256,261
  • Duration: May 2026 - April 2030
  • Status: Ongoing

Project coordination
National Leprosy Control Program of Madagascar

Partners
Hôpital militaire d'Antananarivo
Leiden University Medical Center (LUMC)
Institute of Tropical Medicine
Fondation Mérieux, Scientific and Medical Department
School Health Service, Ministry of education
Fondation Raoul Follereau
Centre d'Infectiologie Charles Merrieux

Aim: To co-develop, evaluate and constantly improve a school-based intervention that consists of (i) sensitizing school children and staff about leprosy and scabies, and (ii) active screening of leprosy and scabies among school children, with the aim of increasing knowledge about skin diseases and the acceptability of medical interventions such as clinical screening and blood sampling for anti PGL-I test at community level.

Full project title: 
Empowering Young Minds: A School-Based Strategy to Combat Skin Neglected Tropical Diseases in Madagascar

Project summary:
Access to healthcare remains a major challenge in Madagascar. More than 60% of the population lives over five kilometres from a health centre, and only a small proportion of people living in extreme poverty benefit from financial support for healthcare. However, barriers to healthcare are not limited to distance and cost. Even when services are available, they are not always accepted or viewed as the preferred source of care. Previous studies, including our earlier research on post-exposure prophylaxis for leprosy, have shown that healthcare interventions do not always achieve the expected level of community uptake.

These challenges contribute to ongoing health problems across the country. Madagascar faces a dual burden of disease, with both communicable diseases and chronic conditions such as diabetes and hypertension affecting the population. Among the most neglected conditions are leprosy and scabies, which continue to disproportionately impact vulnerable communities.

Leprosy remains a public health concern in Madagascar. In 2023, children accounted for 6% of newly diagnosed leprosy cases, a figure that has remained largely unchanged over the past five years. This persistent level of transmission presents a challenge to the World Health Organization's goal of eliminating leprosy by 2030. For scabies, reliable national data remain limited, although the Ministry of Health regularly receives reports of outbreaks. For both diseases, cases are often detected late because many people only seek care when symptoms become severe. These delays highlight the need for greater awareness and earlier detection.

The World Health Organization recommends involving schools in health promotion activities. By learning about disease prevention and sharing that knowledge with their families and communities, children can become important agents of change. Although similar school-based approaches have shown promising results in other countries, no child-centred strategy has yet been tested in Madagascar.

This project aims to evaluate such an approach over a three-year period. The study will be conducted in primary schools across four regions of Madagascar, including both urban and rural settings with varying levels of leprosy and scabies occurrence. The research will explore how children, teachers, and community members understand these diseases and how they respond to interventions such as health education, medical screening, and biological sample collection.

Working closely with schoolchildren and teachers, the project will develop a child-friendly awareness tool tailored to the school environment. Health education activities will be implemented alongside skin disease screening campaigns. The study will also collect finger-prick blood samples from healthy children who show no visible signs of leprosy to assess how many have been exposed to Mycobacterium leprae without developing disease. This information will be used as an indicator of disease transmission within the wider community. Participation in this component of the study will be limited to children whose parents or guardians have provided informed consent.

To evaluate the effectiveness of the intervention, Knowledge, Attitudes, and Practices (KAP) surveys will be conducted before and after the awareness campaigns. The findings will help assess changes in awareness, perceptions, and behaviours related to leprosy and scabies.

By generating evidence on the role of schools and children in disease awareness and early detection, the project seeks to inform new approaches to the control of neglected skin diseases in Madagascar and other similar settings.

Amplifying the Voices of NTD Affected Persons through Contextualised Training in Ethiopia

  • Grant: RESILIENTD Grant
  • Research priorities: Social determinants of health
  • Country: Ethiopia
  • Project no.: NTD.FP26\107
  • Budget: €202,271
  • Duration: April 2026 - April 2029
  • Status: Ongoing

Project coordination
Armauer Hansen Research Institute

Partners
McGill University
German Leprosy and TB Relief Association (GLRA)
Leprosy Mission International- Ethiopia
NLR - until No Leprosy Remains
College of Medicine and Health Sciences, Haramaya University

Aim: The project aims to explore how contextualised, modified training materials can contribute to the participation of persons affected by leprosy, lymphatic filariasis, and podoconiosis in decision-making, the effectiveness of NTD programmes, and the reduction of stigma.

Full project title:
Amplifying the Voices of Persons Affected by Leprosy, Lymphatic Filariasis, and Podoconiosis through Contextually Adapted Training Materials: A Participatory Approach to Reducing Stigma and Enhancing Participation in Neglected Tropical Disease Programmes in Ethiopia

Project summary:
Leprosy, podoconiosis, and lymphatic filariasis are neglected tropical diseases that can cause severe physical disability and social stigma, particularly in poor and underserved communities. Leprosy is often associated with disability and social exclusion. Similarly, podoconiosis disproportionately affects impoverished farming communities, while lymphatic filariasis can lead to stigmatizing conditions such as hydrocele in men and swelling of the legs. Despite significant global efforts to control these diseases, they continue to place a substantial burden on affected individuals and communities, particularly in endemic countries such as Ethiopia.

This study seeks to answer the question: How can contextually adapted training materials for people affected by leprosy, lymphatic filariasis, and podoconiosis improve visibility, reduce stigma, and enhance participation in NTD-related programmes in Ethiopia?

The study will use a Participatory Action Research (PAR) approach to develop and evaluate training materials tailored to the needs and experiences of people affected by these diseases. The research will begin with a needs assessment involving people affected by leprosy, lymphatic filariasis, and podoconiosis, as well as health workers and community leaders. This assessment will identify barriers to participation and explore the social determinants that influence health outcomes and experiences of stigma. The findings will help identify gaps and inform the adaptation of existing advocacy and leadership training materials to the local context.

Based on these findings, culturally and linguistically appropriate training materials will be developed. Their effectiveness will be assessed through pre- and post-implementation surveys, together with participant feedback, to evaluate changes in knowledge, participation, and experiences of stigma.

Six months after the intervention, a follow-up evaluation will assess the extent to which participants have taken on advocacy and leadership roles and examine longer-term outcomes related to empowerment, knowledge, participation, and stigma reduction.

The findings will be shared internationally to support efforts in other countries facing similar challenges related to neglected tropical diseases, disability, and stigma.

Integrated ACSM strategies for control of Leprosy, LF and Tungiasis in Kenya and Tanzania

  • Grant: RESILIENTD Grant
  • Research priorities (new): Health Systems
  • Research priorities: Social determinants of health
  • Country: Kenya, Tanzania
  • Project no.: NTD.FP26\106
  • Budget: €268,623
  • Duration: May 2026 - April 2030
  • Status: Ongoing

Project coordination
Kenya Medical Research Institute (KEMRI)

Partners
Ifakara Health Institute
Ministry of Health, Kenya
Ministry of Health, Tanzania

Aim: The study aims to develop feasible and sustainable community advocacy, communication, and social mobilization (ACSM) interventions to inform the design of implementation research and enhance integrated Morbidity Management and Disability Prevention (MMDP) for the prevention, control, and eventual elimination of leprosy, lymphatic filariasis, and tungiasis, particularly in Kenya and Tanzania.

Full project title:
An implementation research to develop integrated interventions for community mobilization and advocacy for control and elimination of Leprosy, LF and Tungiasis in Kenya and Tanzania.

Leprosy, LF, and Tungiasis are neglected tropical diseases (NTDs) that still affect marginalized communities in Kenya and Tanzania, causing physical, social, and economic harm. While treatment programs exist through multi-drug therapy (MDT) for Leprosy, with Kenya and Tanzania reaching post MDA surveillance phases for LF, uptake and coverage remain inconsistent in some endemic communities. In the recent past, there has been reported resurgence and reemergence of new cases in the Kenya and Tanzania calling for interventions to address the i) socio-economic factors such as poverty, poor water, sanitation and hygiene practices(WASH), inadequate housing, overcrowded living conditions, low literacy and disease awareness, stigma and discrimination, ii) environmental factors, and iii) health system determinants; limited access to care, costs of access, delayed diagnosis and treatment, inadequate infrastructure and specialized personnel, and insufficient resources, key contributors to transmission and disease incidence.

The goal of this study is to use integrated advocacy, communication and social mobilization (ACSM) strategies to raise awareness, improve disease perception, reduce stigma, promote prevention, and early seeking of care. By combining ACSM efforts with innovations such as Morbidity Management and Disability Prevention (MMDP), decentralization of care through introduction of skin clinics at local health facilities and health messaging, the project aims to strengthen the fight against these diseases in the affected communities.

This is a mixed methods study conducted in Kenya and Tanzania with a formative , intervention and post-intervention approach. Quantitative data will be collected through a survey with 854 community members to assess drivers of infection, community knowledge and perceptions towards leprosy, LF and tungiasis. Culturally acceptable ACSM materials will be developed and rolled out to the study communities and an endline survey conducted to assess the impact of ACSM.

Qualitative data will be collected through micro narratives with persons with disabilities from the three skin diseases to assess their lived experiences, required social economic support, stigma reduction strategies and barriers and facilitators of uptake of MMDP, households of randomized patients into the MMDP interventions will be GPS mapped for ease of follow-up. Focus group discussions (FGDs) with community members and in-depth interviews with community leaders to help the team establish baseline data on social and health determinants will be conducted. To understand health system drivers of infections and intervention sustainability, key informants interviews (KIIs) will be conducted with healthcare workers, NTD program managers and policymakers. Costing of community driven outreach skin clinics will be conducted to assess feasibility.

Quantitative data will be analyzed using STATA version 15 while qualitative data will be analyzed using NVivo version 12.0. The study is expected to generate a novel scientific innovation by providing the first evidence on the integration of ACSM and MMDP for skin-related NTDs. It will produce practical tools, including ready-to-use training manuals, costing templates, and validated stigma measurement scales. For policy impact, the study will develop a blueprint to inform the Kenya and Tanzania NTD master plans, as well as contribute to the refinement of WHO guidelines.

Effectiveness of mascot-led leprosy awareness program

  • Grant: Research Capacity Strengthening Grant
  • Budget round: 2025
  • Research priorities: Stigma and discrimination
  • Country: Nepal
  • Project no.: CS_FP25\13
  • Budget: €19,843
  • Duration: 15 months
  • Status: Ongoing

Project coordination
The Leprosy Mission Nepal

Aim: This study aims to assess the effectiveness of a mascot-led communication strategy with a blanket awareness program to improve knowledge and reduce leprosy-related stigma among school-going children in Nepal.

Full project title:
Evaluating the Effectiveness of a Mascot-Led Communication Strategy for Leprosy Awareness Among School-Going Children in Nepal

Project summary

Leprosy is a curable disease, but many individuals affected by leprosy are stigmatized in their communities because of fear and misunderstanding, leading to social exclusion. These negative associations and beliefs are passed from one generation to another and take hold during adolescence. This study aims to improve the understanding of leprosy and reduce stigma associated with leprosy by increasing the knowledge of school going children aged 10-18 years. Children can also be powerful messengers for change by sharing information with their parents, friends, and their community. However, very little is known about the best method to increase the knowledge of leprosy amongst children. Since different age groups learn differently, it is essential to find the best way to educate children to achieve the desired outcome of reducing stigma associated with leprosy.

Mascots have been used in different settings for spreading awareness about hand washing, climate change, and other health issues. However, they have not been utilized fully to tackle stigma in leprosy. This study will use two videos; one featuring an animated mascot, and one without. A total of 583 students from two schools will be enrolled in the study. Students from one school will be shown the video featuring the mascot, while students from the other school will receive the video without the mascot. The messages in both videos will be the same and will be co-created by two groups, one involving health professionals and individuals with lived experiences, and another involving community leaders, religious leaders, schoolteachers, and a representative of the student body. Data from the students will be collected through surveys before, after, and after two months of showing the videos. The study will determine the best medium to improve knowledge and reduce stigma by comparing the change in knowledge and stigma levels before and after watching the videos. Following the determination of the best strategy to increase knowledge and reduce stigma, the strategy will be integrated into existing projects of The Leprosy Mission Nepal and will also be shared with partners working in leprosy in Nepal.

Regional Leprosy Stigma in Bangladesh

  • Grant: Research Capacity Strengthening Grant
  • Budget round: 2025
  • Research priorities: Stigma and discrimination
  • Country: Bangladesh
  • Project no.: CS_FP25\12
  • Budget: €19,650
  • Duration: Dec 2025 - September 2027
  • Status: Ongoing

Project coordination
The Leprosy Mission International Bangladesh

Aim: The study explores why stigma varies geographically between Dhaka (urban, high literacy) and Nilphamari (rural, traditional), focusing on the socio-cultural, economic, educational, religious, and disability-related factors.

Full project title: 
Regional Variations in Social Stigma Toward Leprosy Patients in Bangladesh: A Comprehensive Study

Project summary
Leprosy-related stigma in Bangladesh continues to present a significant public health challenge, which delays diagnosis, isolates patients, and impairs mental health, despite a low burden of 0.27 per 10,000 (2021). This stigma differs between places. This study focuses on understanding these variations by comparing two distinct regions: Dhaka, an urban area with higher literacy and diverse religious practices, and Nilphamari, a rural, traditional setting characterised by lower education levels and a predominantly Muslim population. This comparative approach allows for a focused investigation into how socio-cultural, economic, educational, religious, and disability-related factors contribute to and perpetuate stigma.

By identifying the specific factors that influence stigma in these varied contexts, this research aims to inform more effective and targeted interventions. The importance of the study is underscored by the need to understand such variations to improve health outcomes and social well-being for affected individuals. The insights generated by this research will be critical for informing the development of faith- and disability-inclusive interventions, which are essential for supporting the World Health Organization’s leprosy elimination goals. Therefore, this study aims not only to contribute to the academic body of knowledge but also to yield practical benefits for stakeholders and society.

  1. DEDIKASI-App for Post-RFT Leprosy Patients in Indonesia
  2. Skin Health Programme in a Penitentiary (SHEPP)
  3. SDH in people affected by leprosy in Ethiopia
  4. Harmonised Model for Optimizing Peer Support Group Effectiveness and Sustainability

Subcategories

Diagnostic tests

Disability

Operational research

Stigma & discrimination

Transmission

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