Written evidence submitted by Alzheimer’s Research UK (IGR0046)

January 2025

Introduction

Alzheimer’s Research UK is the leading dementia research charity in the UK working to revolutionise the way we treat, diagnose and prevent dementia. Since 1998, we ha

Wve committed over £171 million of funding for dementia research across the UK through more than 1000 projects. In addition, currently, our Research Network brings local expertise from 48 different universities and institutions to collaborate across 12 scientific centres of excellence. For the purposes of this submission, we have not sought to answer all the questions posed by the committee, rather those to which we can usefully provide some information.

How does the Government drive research and innovation in our regions?

Strategic national investment from government is important to ensure that research funding is targeted across all regions of the UK. As a nation, the UK conducts world-leading neurodegeneration research, thanks in large part to world leading institutions combined with bold and strategic investments by successive governments to build the UK’s infrastructure and facilitate sustained dementia research of the highest quality. The UK has a unique combination of strengths in:

• Discovery science, which brings together over 800 researchers working towards treatments and technologies to improve the lives of people living with dementia.
• World-class digital health data and unrivalled cohorts of patients for medical research, e.g., Dementias Platform UK,[1] Health Data Research UK,[2] the UK Biobank[3] and Our Future Health.[4]
• Biomedical and care research charities, e.g., Alzheimer’s Research UK and Alzheimer’s Society, who are currently coordinating a multi-million-pound research initiative to help make blood tests for Alzheimer’s disease in the NHS a reality. This initiative has attracted investment in the UK from Gates Ventures, amongst others.[5]
• The research capacity of the NHS.

To capitalise on these strengths, the previous Government launched the Dame Barbara Windsor Dementia Goals programme as part of its wider Life Sciences Vision.[6] The Goals Programme aims to coordinate efforts and accelerate the development and deployment of new dementia treatments has received backing from the current government. The Goals Programme seeks to bring together industry partners to maximise government investment through match-funding, offering the potential to drive both short and longer-term economic investment. Its main delivery vehicle is the Neurodegeneration Initiative which will help deliver its objectives around biomarkers, clinical trials and implementation of new treatments in the NHS. It aims to be a globally unique, not-for-profit, public-private partnership that will work together across government, industry, academia, the NHS and the third sector.

There are some challenges which will need to be addressed if we are to realise the wider opportunity and ensure the UK is a life sciences powerhouse and can continue to innovate and drive growth. For example, from 2014-2023 the UK dropped from 2nd to 6th globally in terms of the number of Alzheimer’s disease clinical trials initiated. Amongst the top 10 countries for dementia clinical trials initiated in 2022, the UK has the lowest proportion of phase 3 trial sites (76 across the UK, including in all four nations), limiting the population’s ability to participate in late-stage trials for innovative new dementia drugs. This is highlighted by the lack of phase 3 trial sites in the UK for the new disease-modifying treatments for Alzheimer’s – the first treatments to tackle the underlying mechanisms and slow progress of the disease. The UK holds a unique advantage with its diverse population, making it highly appealing to pharmaceutical companies for conducting clinical trials and testing medicines;[7] however, there is significant untapped potential to fully leverage this opportunity.

Through targeted investment by government, challenges in dementia trials are surmountable, with initiatives already in place which offer tremendous potential for benefit by increasing the pace of this work.  Additionally, this sustained funding is vital for the broader 10-year Research and Development (R&D) strategy, which aims to keep the UK at the forefront of global innovation and fulfil the life sciences plan's commitment to securing the highest sustained growth in the G7 – with good jobs and productivity growth in every part of the country. 

How do factors such as the tax system, regulatory frameworks and standards influence the success of start-ups, spin-outs, and other innovation-driven businesses?

The UK’s research funding landscape is fragmented with several bodies representing the research sector often cutting across two or more different government departments. While this diversity offers strengths such as varied contact points and avenues for collaboration, it can create bottlenecks such as delays in funding deployment. To improve efficiency, the UK could benefit from presenting a unified, seamless approach. A single front door would simplify engagement for potential life science investors and enhance the UK’s ability to attract investment by appearing more aligned internally and joined up externally.

Delays in regulatory approvals, burdensome site-level checks, and duplicative processes remain significant barriers to clinical trial progress. For instance, the UK’s median time to move a clinical trial from application to first patient dose in 2022 was 271 days—40 days slower than Spain and 49 days slower than the UK median in 2018.[8] These delays reduce the UK’s competitiveness in attracting global clinical trials. In turn, they discourage investment in UK-based research leading to fewer clinical trials being conducted.[9] Progress has been made in recent years following the publication of Lord O’Shaughnessy’s review of commercial clinical trials but sustained action is needed to address long standing issues.

This complex regulatory environment slows the approval and introduction of new treatments and technologies to the NHS which in turn risks disincentivising life science companies from bringing investment and new innovations to the UK.By streamlining processes, the government can reduce delays and consequently increase the confidence of pharmaceutical investors, which will lead to increased investment in the UK. To enhance the Medicines and Healthcare products Regulatory Agency’s (MHRA) ability to expedite medicines approvals, it is essential to ensure the agency is adequately resourced and supported by a highly skilled and optimally trained workforce.

To foster innovation and economic growth, the UK needs clear innovation pathways that streamline the development and adoption of new therapies. Phase IV studies play a crucial role in validating treatments by providing long-term data on their effectiveness, safety, and potential in specific patient groups or when combined with other therapies. These studies increase investor confidence and support further funding, while also creating jobs and promoting collaboration across the healthcare and research sectors.

Additionally, there is a need to make better use of existing post-access marketing schemes, such as the Innovative Medicines Fund (IMF). Established in 2022, the IMF was created to provide access to new, innovative non-oncology treatments where there is uncertainty around data on outcomes and costs. However, its use has been limited to date.[10] By fully utilising the IMF and similar schemes, more technologies could be brought to market, enhancing the UK’s appeal as a launch destination for pharmaceutical companies. This would, in turn, attract more investment, further strengthening the UK’s position in the global pharmaceutical landscape.

How does research and innovation in our regions drive growth and prosperity in those regions?

Research must be representative of the population if we are to fully understand the diseases that cause dementia and bring about a treatment that works for everyone. To achieve this requires sustained government leadership and investment to embed and promote research across all UK regions. Action is needed to create equitable opportunities for participation, supporting areas which have less research activity and infrastructure.

Investing in UK dementia research offers an opportunity to bolster our economy, by supporting thousands of high-value jobs across the UK and attracting private investment from pharmaceutical industry. Every £1 invested in dementia research between 2020-2040 will return £2.91 to the UK economy, resulting in £670 million of economic impact and supporting 9,309 full-time equivalent jobs across the UK.[11]

More widely, every additional £1 of public research is associated with an additional £0.83-£1.07 of private sector research and development spend in the UK. Industry-funded clinical trials across all disease areas generated £7.4 billion gross value added (GVA) to the UK economy, and 65,000 jobs in 2022.

Dementia research has a presence in all four countries of the UK and all regions of England. Alzheimer’s Research UK Research Network[12] includes 12 centres across the UK. Research and development expenditure per head in the East of England in 2022 was £1,106, while the North East and Wales had investment of £278 and £252 per head respectively[13]. Many of the jobs in dementia research are scientific and technical roles, which tend to be highly skilled. Accordingly, full-time salaries in dementia research and development are on average 41% higher than the average salary across all jobs in a region[14]. This has a positive knock-on impact across the supply chain, as well as opening more opportunities for participation in research.

Dementia research can particularly benefit parts of the UK where salaries are typically lower by creating well-paid jobs, and therefore increasing living standards locally and helping to tackling inequalities across the UK. It also increases opportunities for wider and more representative participation in research across the population of the UK.

22 January 2025

CONTACT US

We would be happy to discuss any of the issues raised in this paper in more detail. Please contact us at policy@alzheimersresearchuk.org.