• Research priorities: Operational research
• Country: Bangladesh
• Project no.: FP23.13
• Budget: €47,680
• Duration: January 2023 - December 2023
• Status: Completed

The primary objective of thie study is to analyse the data over a 5-year follow-up period to compare the incidence of leprosy in the three cohorts, and to perform in-depth statistical analysis taking cluster effects into account. 

Leprosy incidence, clustering and risk factors: Evidence from 5-year follow-up trial Maltalep and Ideal study in Bangladesh.

Project coordination

• Erasmus MC, University Medical Center Rotterdam

Project summary

Leprosy remains a public health problem in many countries. Leprosy occurs frequently among close contacts of affected persons. The pre-dominant mode of transmission of M. leprae is through the air (inhalation). The Maltalep trial in Bangladesh assessed the extent to which single dose rifampicin (SDR) suppresses excess leprosy cases among contacts in the year after BCG vaccination. At two years follow-up, there was no convincing effect of SDR. In this study the researchers aim to assess the results of the trial at 5 years follow-up. The proportions of new leprosy cases will be compared between two intervention arms (BCG vaccine with and without SDR) and in this study also include the 5-year follow-up of a non-intervention cohort that was followed simultaneously with the Maltalep trial. The results may inform the development of improved policies towards the elimination of leprosy in Bangladesh and countries with similar settings.

Co-financer: Turing Foundation

• Research priorities: Operational research
• Country: France
• Project no.: FP23.11
• Budget: €60,000
• Duration: July 2023 - June 2025
• Status: Ongoing

This study aims to conduct an international study involving laboratories participating in the leprosy diagnosis all over the world aiming at sharing a pilot external quality assessment (EQA) scheme for microbial diagnosis of leprosy and drug susceptibility testing (DST).

Setting an external quality assessment (EQA) programme for enhancing capacity building focusing to the microbiological tools used in the diagnosis of leprosy and the detection of drug resistance

Project coordination

• French National reference center for mycobacteria

Project summary

Diagnosis of leprosy needs to be improved in many places of the world since transmission is ongoing with new child cases every year and there are no sharp decrease in the new cases and incidence. Although clinical signs and examination of the patient are often sufficient to diagnose a new case, microbiological diagnosis is helpful for cases difficult to diagnose or to treat, especially in relapse cases, and in areas where expertise in leprosy is deficient. In addition, detection and surveillance of resistance to antileprosy drugs is now mandatory for all endemic countries for retreated cases as well as a part of new cases.

Research questions: Microbial diagnosis of leprosy and molecular detection of resistance to antileprosy drugs is done using analysis tools such as microscopy, detection of Mycobacterium leprae DNA, detection of mutations conferring resistance. These microbiological tools are implemented in many endemic regions, but they are mostly following in house protocols (no commercially available kits in most places), they are rarely standardised and never evaluated for their reliability. This project will organise a pilot external quality assessment (EQA) to compare results of leprosy labs when performed of identical samples.

Plan of investigation: The research group's lab, which is one of the supranational reference labs for surveillance of drug resistance, will prepare some tissue samples containing (positive samples) or not (negative samples) M. leprae. Since this bacteria cannot multiply in vitro, and because human skin biopsies will not be used, the researchers will take samples of animals infected with M. leprae, the classical one being the mouse model where M. leprae grows in their footpads. These samples will be shipped to diagnostics labs located in leprosy endemic regions and who are involved with routine leprosy diagnosis. These labs will also, in return, send to the research group's lab some (randomly chosen) of the skin samples they received from leprosy cases in their area for diagnosis purposes. The researchers will compare all the results obtained by the laboratories on the same sample: those with more than 80% of concordant test results will get a EQA certificate; those with under 80% concordance will be invited for a second EQA round and workshop meetings in order to improve their technical skills and succeed on the second EQA year. All the samples studied from the endemic regions labs will be used to draw a map of diagnosis capacity and drug resistance rates certified by microbiological laboratories. This will help the managers and the authorities to involve these labs in the projects on elimination of leprosy and surveillance of resistance to antileprosy drugs.

• Grant: LRI Regular Grant
• Budget round: 2023
• Research priorities: Operational research
• Country: Ghana
• Project no.: FP23\9
• Budget: €100,166
• Duration: March 2023 - February 2026
• Status: Completed
• Co-funding partners: St. Francis’ Leprosy Guild

Project coordination
Hope Rises International

Partners
Ghana National Leprosy Control Program
IDEA-Ghana
Leper’s Aid Initiative (Catholic NGO)

Aim: The primary research question of the project was: How can persons affected by leprosy support early case detection and DMDI in rural settings, specifically in the Upper West Region of Ghana?

Full project title:
The role of persons affected as agents of change in their community: leprosy peer mentors to support case detection, DMDI and stigma reduction.

Final project summary:
Leprosy continues to cause new infections and disability in Ghana, with an average of 267 new cases reported annually between 2017 and 2021. Most cases are still detected through passive case finding, meaning that individuals seek care only after noticing symptoms, often following long delays. This project explored whether people who had experienced leprosy and successfully completed treatment could take on a more active role within their communities by helping to identify and refer new cases, supporting newly diagnosed patients, and addressing the stigma associated with the disease.

The study was conducted in the Ashanti and Upper West Regions of Ghana between 2023 and 2026. It was led by Hope Rises International (formerly American Leprosy Missions) in partnership with the Ghana National Leprosy Control Programme, IDEA Ghana, the Leper's Aid Initiative, and the Father Campbell Foundation.

The project was implemented in four phases. During the first phase, interviews with 23 people affected by leprosy and 61 health workers revealed that an informal peer referral system already existed within communities. Notably, 91% of interviewed patients reported having referred someone with possible leprosy symptoms for care before any formal programme had been established.

In the second phase, researchers interviewed 30 patients and 22 peer mentors, assessed the mentors' knowledge of leprosy, and evaluated 61 health facilities to determine their readiness to receive referrals. The third phase brought together people affected by leprosy, health workers, programme focal persons, and partner organisations in a co-creation workshop held in July 2025. Together, they developed a community-based peer mentor model tailored to the local context.

The model was implemented during the fourth phase, when 22 trained peer mentors worked across six districts between August 2025 and March 2026. During this eight-month period, peer mentors identified 105 people with suspected leprosy. Of these, 41 individuals (39%) were laboratory-confirmed as having leprosy in districts where case detection had previously stalled.

The model proved particularly effective in reaching groups that had been underrepresented in the formal health system. Women accounted for 64% of suspected cases identified through peer mentors. Among confirmed cases, women had been living with symptoms for an average of two years before being identified—twice as long as men.

Peer mentors also demonstrated significant gains in knowledge during the project, with average scores increasing from 78.0% at baseline to 89.4% at the end of the study. A key feature of the model was the willingness of peer mentors to share their own experiences of leprosy. Twenty-one of the 22 mentors reported openly discussing their past illness with people they supported. Mentees frequently described these personal stories as the factor that convinced them to seek care. As one health worker observed, the peer mentor became “the bridge between us.”

The study demonstrated that a community-based peer mentor approach can support early case detection, reduce stigma, and create meaningful roles for people affected by leprosy within disease control efforts. The findings also highlight the potential value of lived experience in improving community engagement and encouraging timely access to care.

Future scale-up of the model will depend on several factors, including reliable drug supplies, structured compensation for peer mentors, and continued investment in stigma research and long-term follow-up.

• Grant: LRI Regular Grant
• Budget round: 2023
• Research priorities: Stigma and discrimination
• Country: India
• Project no.: FP23\4
• Budget: €107,268
• Duration: July 2023 - March 2026
• Status: Completed

Project coordination
NLR India Foundation

Partners
The Task Force for Global Health
NLR
Association of People Affected by Leprosy (APAL)
Emory University,Atlanta,USA
Life University, GA,USA

Aim: This study aims to address the following research question; To what extent can compassion training that specifically addresses stigma improve compassion and quality of care offered by health workers to persons affected by leprosy and other stigmatizing health conditions?

Full project title:
Compassion training for reducing stigma and improving quality of care for persons affected by leprosy 

Final project summary:
People affected by leprosy often experience stigma, discrimination, and social exclusion, which can have a profound impact on their wellbeing, healthcare experiences, and quality of life. While healthcare services play a critical role in supporting affected individuals, the attitudes, behaviours, and communication skills of healthcare providers can significantly influence how patients feel about themselves and the care they receive.

Recognising the importance of compassionate healthcare, this project set out to develop, implement, and evaluate a training programme designed to help healthcare workers better understand stigma and deliver more respectful, empathetic, and person-centred care to people affected by leprosy in Jharkhand, India.

The project began with extensive consultations involving healthcare workers, people affected by leprosy, and their family members. Through questionnaires, interviews, and group discussions with 80 healthcare workers and 80 affected individuals, researchers explored experiences of compassion, stigma, discrimination, and healthcare delivery. These findings informed the design of a tailored compassion-focused training programme.

Three key training resources were developed: a Facilitators’ Guide, a Doctors’ Self-Help Guide, and a Paramedical Workers’ Self-Help Guide. The training was delivered to four groups of healthcare providers, including doctors, nurses, counsellors, paramedical workers, and support staff. To reinforce the learning, the project also created a Ten-Point Compassion Charter, encouraging healthcare workers to treat patients with dignity and respect, understand their emotional experiences, promote inclusion, and reflect on their own attitudes and behaviours.

Following the training, researchers conducted a comprehensive evaluation involving the same number of healthcare workers and persons affected by leprosy, alongside in-depth interviews and focus group discussions.

The results were highly encouraging. People affected by leprosy reported improvements in their overall wellbeing and described healthcare workers as being more understanding, supportive, and respectful. Participants felt that the quality of care they received had improved, and many reported reduced feelings of shame about their condition and lower expectations of being discriminated against. Although stigma in the wider community remained a challenge, the healthcare environment became noticeably more welcoming and inclusive.

Healthcare workers also demonstrated significant positive changes. Participants reported greater compassion in their daily practice, improved communication skills, increased emotional awareness, stronger teamwork, and a greater focus on understanding and responding to the individual needs and experiences of patients.

The study showed that compassion training is both practical and effective within routine primary healthcare settings. By addressing not only knowledge and attitudes but also empathy, self-reflection, emotional awareness, self-compassion, and provider wellbeing, the programme represents an important advance beyond traditional stigma-reduction approaches.

In the short term, the intervention improved patient-provider relationships, enhanced patient wellbeing, and strengthened compassionate care practices among healthcare workers. In the longer term, the training materials, Compassion Charter, and evidence generated through the study provide a scalable model that can be integrated into public health programmes. While developed for leprosy services, the approach also has wider relevance and could be adapted to support care for people affected by other stigmatized health conditions.

The project’s findings have already generated significant interest among policymakers and healthcare providers. Results were shared at a state-level workshop in Ranchi, Jharkhand, and at a national dissemination event in New Delhi in 2026. A policy paper has also been prepared to support wider adoption of compassion-based approaches within health systems.

This project demonstrates that fostering compassion within healthcare is a powerful tool for reducing stigma, improving patient experiences, and promoting more inclusive, person-centred care. By placing dignity, empathy, and understanding at the heart of healthcare delivery, the initiative offers a promising pathway towards better outcomes for people affected by leprosy and other stigmatized conditions.

Impact

Guidebook: Embrace compassion, dissolve stigma - A Self-Help Guide for ParamedicsEmbrace compassion, dissolve stigma - A Self-Help Guide for Paramedics