Introduction: why we need a strategy
The Meningitis Now research strategy is derived from the charity’s vision; a future where no one in the UK loses their life to meningitis and everyone affected gets the support they need to rebuild their lives.
This strategy provides a strategic framework that sets out clear reasons why Meningitis Now funds research and describes the research priorities that have been identified over the last six years. As a member of the Association of Medical Research Charities (AMRC), this strategy also helps ensure that we work to recognised standards of best practice and within the AMRC’s guidelines.
The strategy will be reviewed regularly to ensure that it continues to meet the needs of the charity and its stakeholders and remains relevant in the context of the wider research environment. Regular review will also enable the charity to adapt to new challenges and opportunities in the disease landscape. A plan to deliver this strategy will be developed and executed yearly.
Background: why we fund research
Meningitis Now is working towards a future where no one in the UK loses their life to meningitis and everyone affected gets the support they need to rebuild their lives.
The charity, and its predecessor organisations, have funded laboratory based scientific and medical research into meningitis and meningococcal disease over the last four decades. In many cases, this research has advanced the charity’s aims and objectives, by hastening and improving the development and deployment of vaccines, and by improving scientific and medical understanding of meningitis, its causes, treatment, after-effects and impact.
In recent decades there have been many important scientific developments in the prevention and treatment of meningitis and meningococcal disease, and this has been accompanied by a decline in the number of cases, particularly over the last ten years. Despite this, new cases of disease are still causing death and disability, and many people continue to live with the life-long impact of the disease.
The charity therefore wishes to continue to fund high quality research, the aim of which will be to assist the charity to deliver its two over-riding goals:
- Saving lives and preventing disability through improving prevention, early diagnosis and treatment
- Rebuilding futures and improving quality of life through increased recognition of the impact of meningitis and provision of timely, effective support.
What key research areas have been identified and why
In the past, the charity has primarily funded research related to the prevention and ultimate eradication of the disease. Whilst this remains important and supports the charity’s vision of no one in the UK losing their life to meningitis, there are several other important areas of research to explore, particularly those related to supporting people affected by the disease to rebuild their lives.
Key research areas and priorities:
- Improving prevention
- Improving the speed and accuracy of diagnosis
- Improving treatment
- Improving understanding of the physical, sensory and cognitive after-effects of meningitis, particularly in adults
- Improving understanding of the financial, psychological, social, emotional and educational impact of meningitis on individuals and their families
Following consultation and review in 2023/24, the following were identified as key research areas:
- Improving quality of life - undertake research that looks at long-term outcomes and improves the quality of life for individuals and their families, focusing on issues faced during and after an experience of meningitis.
- Understanding lived experience - gather data on peoples lived experiences of meningitis and real-world outcomes to provide insights that can guide future research and inform best practice. We will ensure that those affected including families and caregivers, have opportunities to contribute to the research agenda, influencing areas that directly affect their lives.
The key areas and priorities described above can be summarised as research aiming to improve the prevention, diagnosis and treatment of meningitis and increase understanding of its impact on those affected. In highlighting these specific areas, the aim is to continue to broaden the scope of the charity’s research programme and develop a portfolio of initiatives with the goal of reducing the impact of meningitis on individuals and society.
How we plan to fund research
Historically, Meningitis Now has predominantly operated response mode funding research grant rounds, in which established research groups from the UK are invited to submit a funding application based on their own research ideas related to the broad issues/topics identified from the charity’s research strategy. Funding is awarded based on the quality of the science. In recent years, the charity has adopted a more flexible approach to funding research, by deploying different methods of allocating funds according to the research question or topic at hand.
In future, the charity will continue to adopt a flexible approach to funding research and develop a portfolio of research methods and initiatives that advance the charities vision and deliver against its research priorities. These will include:
- Response Mode Funding - allocate research grants using the response mode funding method (see appendix 1 and 2 for details). Competitive applications from prospective research teams will be sought and peer reviewed. A panel of scientific advisors will inform decisions on funding awards.
- Commissioned Research - provide funding/research grants to answer specific questions that address the needs of the charity and its beneficiaries. Commissioned research can take many forms and includes laboratory based medical and scientific research as well as psycho-social research. This approach allows Meningitis Now to identify important areas of research and is particularly relevant, but not exclusive, to understanding the impact of meningitis on individuals and families. Where appropriate, applications from prospective research teams will be sought and peer reviewed (see appendix 1 and 2 for details).
- PhD Studentships - provide grants for doctoral research to investigate specialist subject areas relevant to meningitis. This funding will support postgraduate study and tuition fees to propel newly qualified graduates into a research career.
- Small Grants and Seed Funding - provide small grants for pilot projects or proof-of-concept research that can attract further funding from larger organisations or research bodies if promising results are achieved. Also, offer smaller awards for exploratory studies or to support junior researchers.
Who and where will we fund
Our focus is on meningitis research that will be of benefit to the UK, though this does not preclude work with an international scope or relevance, as we recognise that any knowledge gained will add to the global understanding of the disease.
Applications for funding will be invited/considered from researchers, established research groups and organisations, and academic institutions based primarily in the UK.
Animals in Research
As a member of the AMRC, we support the principle of using animals in research when it is necessary to advance understanding of health and disease and to develop new treatments.This research only takes place where there is no alternative available. We are committed to the principals of replacement, refinement and reduction (3Rs) of animal research, and where applicable all research activities are assessed against these criteria.
Collaborations and Partnerships
Previously Meningitis Now has partnered with other research organisations, academic institutions and medical charities to co-fund and collaborate on research projects.
Moving forward the charity will continue to explore opportunities to partner with other research organisations, academic institutions and medical charities to share research costs and resources, to increase the likelihood of funding and maximise the impact of joint research studies or initiatives.
The charity also has a long history of contributing and lending its expertise to a range of external research projects and initiatives that do not require funding. Where relevant to meningitis and our research priorities, and when capacity to deliver allows, we will continue to contribute to external projects and initiatives.
Evaluation and Impact Measurement
Over the next five years we will focus on evaluating and demonstrating the impact of our funded research initiatives. This will include:
- Tracking research outcomes: further develop ways to track research outcomes
- Reporting: regularly publish research findings and progress reports to enhance transparency, inform stakeholders, and adjust research priorities based on new insights.
We recognise that different types/areas of research will result in varied outputs and outcomes, therefore, we will collect information on:
- Publications
- Awards and recognitions
- Next destination and skills of researchers
- Further funding
- Partnerships
- Development of tools and products
- Protected and licensed intellectual properties
- Engagement activities
- Policy influences
Securing Funding
To deliver this strategy, the charity will adopt a structured approach to identify, pursue, and secure resources from a variety of potential funders. Funding for research initiatives will be achieved through a mix of grants from private trusts and foundations, corporate partnerships, direct donor appeals and major gift programmes.
Capability and capacity to deliver this strategy
Meningitis Now will ensure it has the capability and staff capacity to deliver this strategy. There is a reasonable amount of knowledge, expertise and capacity within the existing staff team, as well as the option to draw on clinical and research expertise from scientific advisors, the Honorary Medical Director, and other supporters/stakeholders of the charity. However, if research activities increase and develop, additional capacity, skills, and knowledge will be needed.
A development plan will be activated for relevant members of staff. This will draw on learning from other individuals, organisations or governing bodies with expertise in this field, engaging in learning and training opportunities, and gaining better understanding of best practice within the charity sector.
Appendix 1 - Details of a response mode grant round and call for applications
For response mode funding, the following stages will constitute the application process:
- Call for preliminary, short proposals
- Screening by small number of scientific advisors and Meningitis Now staff
- Invitation to submit a full proposal including ethics approval where applicable
- Unsuccessful applicants notified
- External, independent (peer) review of proposals
- Opportunity for applicants to respond to reviewer’s comments
- Assessment by scientific advisors and recommendation of proposals suitable for funding
- Recommendation to trustees
- Successful applicants informed and grants awarded
- Feedback to unsuccessful applicants
Within a commissioned research framework, an earlier phase may be needed to set the research question. This could comprise of workshops, questionnaires and/or discussions with relevant stakeholders. Once the question is set, the application process will follow the stages listed for response mode funding.
Appendix 2 - Research Grant Application Process
Page last reviewed March 2025. Next review due by March 2027.