Asked by: Jim Shannon (Democratic Unionist Party - Strangford)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if he will provide an update into his Department's research efforts into Motor Neurone Disease.
Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)
Government responsibility for delivering motor neurone disease (MND) research is shared between the Department of Health and Social Care, with research delivered by the National Institute for Health and Care Research (NIHR), and Department for Science, Innovation and Technology, with research delivered via UK Research and Innovation (UKRI), primarily through the Medical Research Council for MND.
The Government is investing in MND research across a range of areas, including an £8 million investment via the NIHR into the EXPERTS-ALS, a pre-clinical study which is designed to accelerate the identification and testing of the most promising treatment candidates for treating amyotrophic lateral sclerosis (ALS), the most common form of MND.
The MND Translational Accelerator, supported by £6 million of Government funding, is connecting the UK Dementia Research Institute, the UK MND Research Institute, and Dementias Platform UK. Twelve projects have been funded through the Accelerator, and all are aimed at speeding up the development of treatments for MND.
In August 2025, the Medicines and Healthcare Products Regulatory Agency approved Tofersen to treat SOD1-ALS, a rare form of MND. Research into Tofersen was supported by NIHR’s Sheffield Biomedical Research Centre, and all three trial phases were delivered by the NIHR’s Research Delivery Network, demonstrating tangible impact of NIHR funded research into MND.
The NIHR and UKRI continue to welcome funding applications for research into MND. These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality.
Asked by: Gregory Campbell (Democratic Unionist Party - East Londonderry)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether he plans to recognise and support Kevin Sinfield CBE's fundraising for motor neurone disease.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
We pay tribute to the outstanding work that Kevin Sinfield had done to raise money for motor neurone disease (MND) charities and raise awareness of the condition. It will truly make a huge difference to those living with MND and their loved ones. We welcome the recent opening of the new Rob Burrow Centre for MND in Leeds. Kevin Sinfield’s fundraising was instrumental to this centre being upbuilt.
The Government is investing in MND research across a range of areas, including an £8 million investment via the National Institute for Health and Care Research into the EXPERTS-ALS study, a pre-clinical study which is designed to accelerate the identification and testing of the most promising treatment candidates for treating amyotrophic lateral sclerosis, or ALS, the most common form of MND.
The MND Translational Accelerator, supported by £6 million of Government funding, is connecting the UK Dementia Research Institute, the UK MND Research Institute, and Dementias Platform UK. Twelve projects have been funded through the Accelerator, with all aimed at speeding up the development of treatments for MND.
Asked by: Lee Anderson (Reform UK - Ashfield)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to support research into motor neurone disease.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
Government responsibility for delivering research into motor neurone disease (MND) is shared between the Department of Health and Social Care, with research delivered via the National Institute for Health and Care Research (NIHR), and the Department for Science, Innovation, and Technology, with research delivered via UK Research and Innovation (UKRI) and the Medical Research Council for MND.
The Government is investing in MND research across a range of areas, including an £8 million investment via the NIHR into the EXPERTS-ALS. This is a pre-clinical study which is designed to accelerate the identification and testing of the most promising treatment candidates for treating amyotrophic lateral sclerosis (ALS): the most common form of MND.
The MND Translational Accelerator, supported by £6 million of Government funding, is connecting the UK Dementia Research Institute, the UK MND Research Institute and Dementias Platform UK. Twelve projects have been funded through the Accelerator; all aimed at speeding up the development of treatments for MND.
The NIHR and UKRI continue to welcome funding applications for research into MND.
Asked by: Matt Vickers (Conservative - Stockton West)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what discussions his Department has had with (a) NHS England and (b) the National Institute for Health and Care Research on (i) expanding the number of recruiting sites for and (ii) including James Cook University Hospital in Middlesbrough in the MND-SMART trial.
Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)
Decisions on site selection for clinical trials rest with the study sponsor, shaped by the design and requirements of the trial.
No discussions about the MND-SMART trial have been held with the Department. However, while we are not directly involved in these decisions, the Department works through the National Institute for Health and Care Research (NIHR) to ensure a fair and transparent process for site identification.
The NIHR’s United Kingdom-wide site identification service enables National Health Service organisations, including the James Cook University Hospital in Middlesbrough, to express interest and suitability to host research. This provides an inclusive and transparent process that ensures opportunities are shared equitably across the country, with decisions guided by the real-time capacity and capability of sites.
The Department is committed to ensuring that all patients, including those with motor neurone disease, have access to cutting-edge clinical trials and innovative, lifesaving treatments.
Asked by: Matt Vickers (Conservative - Stockton West)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what assessment he has made of trends in the level of regional variation in patient access to motor neurone disease clinical trials; and what steps he is taking to ensure equitable access across all NHS regions.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The Department is committed to ensuring equitable access to health and care research, including motor neurone disease (MND) studies, across all National Health Service regions. National Institute for Health and Care Research (NIHR) infrastructure has national coverage, but we recognise that trials in some disease areas can be concentrated in specialist centres, which can result in regional variation in patient access.
Through investment in world-class expertise, specialist facilities, a dedicated research delivery workforce, and coordinated support services, the NIHR enables research to be set up and delivered effectively across the NHS and wider health and care system.
Measures to ensure equitable access include supporting travel and accommodation costs through the Healthcare Travel Costs Scheme, study-level travel reimbursement, and practical assistance from NIHR Clinical Research Facilities and the Research Delivery Network.
In line with the NHS 10-Year Health Plan, there is a growing emphasis on delivering research in community and home settings, supported by digital tools and mobile research teams. This approach reduces the need for hospital visits and ensures that patients with MND can participate in research regardless of their location. This work is complemented by wider Government investment, such as the £6 million MND Translational Accelerator and the £8 million EXPERTS-ALS programme, which are designed to connect research centres nationally and broaden opportunities for patients across regions.
Asked by: Matt Vickers (Conservative - Stockton West)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what assessment he has made of the potential impact of limited trial site locations on the ability of motor neurone disease patients to participate in research; and what support his Department provides to help patients who need to travel significant distances to access trials.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The National Institute for Health and Care Research (NIHR), funded by the Department, supports patients and the public to take part in high-quality research. In 2024/25, the NIHR Research Delivery Network supported 35 motor neurone disease (MND) studies and recruited over 2,900 participants.
We recognise that MND trials are often concentrated in specialist centres, which can create challenges for patients who live far from these sites. To address this, NHS England and the NIHR provide practical support to reduce travel barriers. The Healthcare Travel Costs Scheme enables eligible patients to claim travel expenses for National Health Service appointments, including research visits, while many trial sponsors and sites reimburse travel, accommodation, and subsistence costs. NIHR Clinical Research Facilities and the NIHR Research Delivery Network also provide logistical support to facilitate participation.
In line with the NHS 10-Year Plan, there is a growing emphasis on delivering research in community and home settings, supported by digital tools and mobile research teams.
Asked by: Matt Vickers (Conservative - Stockton West)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, how much funding his Department has allocated to support the (a) development and (b) expansion of MND clinical trial infrastructure.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The Department funds health and care research infrastructure through the National Institute for Health and Care Research (NIHR). This provides world-class research expertise, specialist facilities, a dedicated research delivery workforce, and support services across the National Health Service and wider health and care system in England.
NIHR infrastructure funding is not allocated by individual disease or therapy area. Instead, it underpins the development and expansion of research capacity across all specialties, including motor neurone disease (MND). Examples include:
- Biomedical Research Centres (BRCs), with £909 million awarded from December 2022 to March 2028. Six BRCs conduct research into neurological disease, supporting discovery science and the development of new trial approaches;
- the Research Delivery Network, with approximately £380 million provided each year, providing the NHS with support funding and the workforce to expand research delivery capability across regions, including for MND studies; and
- Clinical Research Facilities, with £214 million invested until 2029 in 28 facilities, creating dedicated spaces for early-phase and complex trials such as drug, cell, and gene therapies, supporting both the development and expansion of MND clinical trials.
Government responsibility for MND research is shared between the Department of Health and Social Care, with research delivered by NIHR, and the Department for Science, Innovation and Technology, with research delivered by UK Research and Innovation (UKRI). In addition, targeted investments are helping to strengthen trial capacity, including £6 million for the MND Translational Accelerator, which connects UK institutes to speed up the development of treatments, and £8 million for the EXPERTS-ALS programme, which screens promising drugs and complements the MND-SMART platform trial.
Asked by: James Cartlidge (Conservative - South Suffolk)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, how much of the £50 million allocated for targeted motor neurone disease research has been allocated as of September 2025.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
Government responsibility for delivering motor neurone disease research (MND) is shared between the Department of Health and Social Care, with research delivered via the National Institute for Health and Care Research (NIHR), and the Department for Science, Innovation and Technology, with research delivered via UK Research and Innovation (UKRI), and in particular via the Medical Research Council.
The commitment to allocate £50 million to MND research was introduced by the previous administration. As of 4 June 2025, when the data was last analysed, a total of £50.2 million has been committed to MND research since the start of the 2022/23 financial year. We will continue to invest in MND research via open competition, with no maximum funding limit.
The Government is investing into MND research across a range of areas, including an £8 million investment via the NIHR’s EXPERTS-ALS trial, an early phase clinical research trial which screens for drugs that have the potential to be successful in clinical trials for people with MND.
The MND Translational Accelerator, supported by £6 million of Government funding, is connecting the UK Dementia Research Institute, the UK MND Research Institute, and Dementias Platform UK. Twelve projects have been funded through the accelerator, and all are aimed at speeding up the development of treatments for MND.
The NIHR and UKRI will continue to welcome funding applications for research into any aspect of human health and care, including MND. These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality.
Welcoming applications on MND to all NIHR and UKRI programmes enables maximum flexibility both in terms of the amount of research funding a particular area can be awarded, and the type of research which can be funded.
Asked by: James Cartlidge (Conservative - South Suffolk)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps he is taking to support research into motor neurone disease.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
Government responsibility for delivering motor neurone disease research (MND) is shared between the Department of Health and Social Care, with research delivered via the National Institute for Health and Care Research (NIHR), and the Department for Science, Innovation and Technology, with research delivered via UK Research and Innovation (UKRI), and in particular via the Medical Research Council.
The commitment to allocate £50 million to MND research was introduced by the previous administration. As of 4 June 2025, when the data was last analysed, a total of £50.2 million has been committed to MND research since the start of the 2022/23 financial year. We will continue to invest in MND research via open competition, with no maximum funding limit.
The Government is investing into MND research across a range of areas, including an £8 million investment via the NIHR’s EXPERTS-ALS trial, an early phase clinical research trial which screens for drugs that have the potential to be successful in clinical trials for people with MND.
The MND Translational Accelerator, supported by £6 million of Government funding, is connecting the UK Dementia Research Institute, the UK MND Research Institute, and Dementias Platform UK. Twelve projects have been funded through the accelerator, and all are aimed at speeding up the development of treatments for MND.
The NIHR and UKRI will continue to welcome funding applications for research into any aspect of human health and care, including MND. These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality.
Welcoming applications on MND to all NIHR and UKRI programmes enables maximum flexibility both in terms of the amount of research funding a particular area can be awarded, and the type of research which can be funded.
Asked by: Matt Vickers (Conservative - Stockton West)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what plans his Department has to support MND Care Centres to participate in (a) research studies and (b) MND-SMART.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The Department is committed to funding health and care research via the National Institute for Health and Care Research (NIHR) across England, to ensure that the research we support is inclusive and representative of the populations we serve. Government responsibility for motor neurone disease (MND) research is shared between the Department for Health and Social Care, with research delivered by the NIHR, and the Department for Science, Innovation and Technology, with research delivered by UK Research and Innovation.
NIHR infrastructure has national coverage and is designed to build research capacity and capability across all settings, including MND care centres, to support participation in all eligible research studies. These mechanisms are well placed to support care centres’ participation in studies such as MND-SMART, ensuring centres have the guidance and practical support needed to take part in this trial.
This sits alongside wider Government investment to accelerate MND research. Examples include £12.5 million to support discovery science at the UK Dementia Research Institute, £6 million for the MND Translational Accelerator, and £8 million for the EXPERTS-ALS drug screening programme, which complements the charity-funded MND-SMART trial.