The Leprosy Research Initiative is a combined venture of the Netherlands Leprosy Relief (NLR), American Leprosy Missions (ALM), German Leprosy and Tuberculosis Relief Association (GLRA) and The Leprosy Mission Canada (TLMC). Guided by a allied policy with clearly defined research priorities, the four partners decided to establish a joint fund to support leprosy research and to establish a mechanism to access external funding also.
The joint fund will be reserved for research that is exclusively or strongly related to leprosy. Additional resources will be actively sought for research in the field of general disabilities and for research aimed at different diseases (e.g. other NTDs, TB and diabetes) in combination with leprosy. Additional external funding will be sought, such as through the recently renewed cofunding agreement with the Turing Foundation, which focuses its support on research into early diagnosis and transmission of leprosy, nerve damage and leprosy reactions. The continuation of this cofunding is an important pillar of our research funding, as TF is prepared to match the funds the coalition raises for research in these areas.
2. Monitoring of supported research via the SRC
In 1987, NLR established a Scientific Research Committee (SCR), comprising a number of independent experts, each of whom monitors a particular field of research (see Annex 1). The composition of the Committee reflects the portfolio of projects that is supported. As in the coming period a gradual shift is expected (see 3.1) the composition of the Committee will change concurrently. The Committee meets face-to-face at least twice yearly. Since 1992 NLR has periodically commissioned independent reviews (audits) of the quality and relevance of its research. The most recent review was carried out in 2008. The next audit will take place in 2014.
3. Research agenda
The coalition is of the opinion that for research to have impact on leprosy control and on the lives of persons affected by leprosy, it is important that these beneficiaries (staff of leprosy control programmes and persons affected by leprosy) are involved and can develop a sense of ownership. Consequently, it is the intention to further develop the involvement of organisations of people affected by leprosy in determining topics for research through active consultation, and, if possible; through involvement in implementation, dissemination and application of results.
3.1 Calls for proposals
To arrive at a balanced research portfolio across the priority areas, the coalition may issue calls for proposals for particular research topics, asking initially for a letter of intent outlining the envisaged approach and an indication of budget and time. In dialogue between the coalition, the field partners and the concerned institutes, more detailed proposals can then be developed.
3.2 Current research priorities
In 2011, the ILEP Technical Commission produced a research agenda of 20 topics for leprosy. On the basis of this agenda and results from a survey among its field partners (including persons affected by leprosy) 5 research areas were selected as main priorities:
1. Prevent delay in diagnosis: Use existing methods to identify barriers to delayed diagnosis and implement solutions in different settings.
2. Early detection of Nerve Function Impairment/reactions: Test new early nerve impairment detection, different steroid regimens and 2nd line treatments.
3. Inclusion research: Analysis of barriers and enablers to inclusion of Persons with Disabilities (including persons affected by leprosy), leading to the design of effective strategies and interventions to increase inclusion.
4. Integration of Prevention of Disabilities in national programmes: Increase coverage of POD activities integrated with other lower limb care in global programmes.
5. Roll out of chemoprophylaxis: operational research aimed at up-scaling.
4.1 For new project proposals
o Research proposals should be submitted to the SRC Secretariat in time for the Committee’s autumn meeting, permitting adequate time for external review by two experts and rebuttal by the researchers. In practice this means a submission deadline of June 1st.
- o The Committee will assess the request, the external assessments and rebuttal (when applicable) and advise the coalition whether or not to fund the proposal.
4.2 For ongoing projects
o A plan of activities and budget should be submitted to the SRC Secretariat on an annual basis (in August), containing also a brief report of achievements in the first 6 months of the current year, a budget request stating the originally requested budget for the coming calendar year and an updated version; any differences should be indicated and justified.
o The Committee assesses submitted project proposals and advises the coalition as to those research proposals it considers relevant for funding.
4.3 General procedures
o Each LRI partner will commit an annual contribution to the joint LRI research fund. This commitment is made for at least 3 years, so that continuity of project funding can be guaranteed.
o Annually, the coalition will decide on a budget reserved for new proposals.
o The coalition will require principal investigators to submit a final summary report of any supported research project upon completion of the project.
5. Selection criteria for proposals
The following criteria will be used to determine the suitability of research project applications:
o The main topic of the study should fall within one of the agreed priority areas.
o If funds are available, other research proposals related to the ILEP Contact-Centred Research agenda may be considered. o Priority will be given to projects that aim to result in tools, techniques or policies directly applicable within leprosy work supported by the coalition.
o Proposals from institutions in endemic areas (or joint proposals including collaboration with an institution from an endemic area) will be given preference.
o Project duration should not exceed four years (48 months).
6. Open access publication
Open access publication of research results is encouraged. Papers based on publicly funded research should be free for anyone to read. Therefore, articles based on coalition-funded research should be published in a scientific, peer-reviewed open access journal.
Last updated: 30 August 2013 (WvB)
7. Annex 1
Composition of the NLR Scientific Research Committee (also called ‘CWO’)
Prof. Dr. W.R. Faber
Emeritus Professor of Tropical Dermatology (Academic Medical Center, University of Amsterdam).
Expertise; Tropical dermatology; in particular Leprosy. Specific interest in neuropathic foot complications, leprosy reactions and other aspects of prevention of disabilities.
Prof. Dr. J.M. Richters
Emeritus Professor of Culture, Health and Illness (Leiden University Medical Center).
Key issues that are focus of her work: "gender, culture, violence, trauma, health and healing, human rights, stigma of HIV/AIDS". Medical anthropological fieldwork in Barbados W.I., Kenya and Malawi. Number of consultancies in public health and human right projects for e.g. WHO and Doctors without Borders.
Prof. Dr. M. Vermeulen
Professor of Neurology, Department of Neurology at Academic Medical Center, University of Amsterdam.
Specialisation: Neurology, in particular clinical scientific research. Focus of research: critical appraisal neurology, clinimetrics, cerebrovascular disorders, inflammatory neuropathies. Special interest and experience in leprosy.
Dr. P.A.M. Schreuder
Medical doctor/leprologist (retired) with long leprosy control field work experience in Thailand, Indonesia and Brazil. PhD in epidemiology of reactions and impairments in leprosy. Broad grasp of leprosy-related medical and public health issues.
Dr. F. van Dijk
Rehabilitation Physician at the Rehabilitation Centre Het Roessingh in the Netherlands.
Tropical Medicine work experience in Kenya; Med Director Alupe Leprosy Hospital and Training Unit, West Kenya leprosy and TB control program.
Prof. Dr. T.S. van der Werf
Pulmonologist, Head of the Infectious diseases Service & Tuberculosis unit at the University Medical Centre Groningen. Great affinity for tropical medicine, expert in the area of mycobacterial infections. Focus on: Buruli ulcer. Field work experience in Kenya and Ghana.