Asked by: Steve Baker (Conservative - Wycombe)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, with reference to My Name'5 Doddie Foundation's report entitled Accelerating research for a treatment for motor neurone disease (MND), if he will implement the recommendation of that report to fund £50 million over five years in a new MND Research Institute.
Answered by Edward Argar - Minister of State (Ministry of Justice)
The Department has not made a specific assessment of the report. The Government is committed to supporting research into dementia and neurodegeneration, including motor neurone disease (MND). Over the past five years, the Department has spent over £9 million on MND research through the National Institute for Health Research. Additionally, UK Research and Innovation, through the Medical Research Council, has spent £45 million on MND research over the past five years. This includes research which aims to increase our understanding of the causes and genetic mechanisms of MND. We are currently working on ways to significantly boost further research on dementia and neurodegeneration at all stages on the translation pathway including medical and care interventions.
Asked by: Steve Baker (Conservative - Wycombe)
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 implications for his polices of the report entitled, Accelerating research for a treatment for motor neurone disease, published by the My Name'5 Doddie Foundation.
Answered by Edward Argar - Minister of State (Ministry of Justice)
The Department has not made a specific assessment of the report. The Government is committed to supporting research into dementia and neurodegeneration, including motor neurone disease (MND). Over the past five years, the Department has spent over £9 million on MND research through the National Institute for Health Research. Additionally, UK Research and Innovation, through the Medical Research Council, has spent £45 million on MND research over the past five years. This includes research which aims to increase our understanding of the causes and genetic mechanisms of MND. We are currently working on ways to significantly boost further research on dementia and neurodegeneration at all stages on the translation pathway including medical and care interventions.
Asked by: Jessica Morden (Labour - Newport East)
Question to the Department for Business, Energy and Industrial Strategy:
To ask the Secretary of State for Business, Energy and Industrial Strategy, pursuant to the Answer of 11 January to Question 130668, if he will name the projects that received funding in 2019-20 from the (a) Medical Research Council and (b) National Institute for Health Research.
Answered by Amanda Solloway - Government Whip, Lord Commissioner of HM Treasury
The Medical Research Council (MRC) funded seven Motor Neurone Disease-related projects in 2019-20 in pursuant to the Answer of 11 January to Question 130668. Details of the projects can be found in the table below.
Research Organisation | Project Title | Start Date | End Date | Amount Awarded (£m) |
University College London | The impact of TDP-43 on translation and the response to axonal damage in amyotrophic lateral sclerosis | 01/10/2019 | 30/09/2024 | £1.9m |
University College London | Elucidating early stage ALS pathomecanisms that drive mitochondrial dysfunction | 01/01/2020 | 31/12/2022 | £0.9m |
University of Sheffield | Regulation of ER-mitochondria contacts in neurodegeneration | 01/07/2019 | 30/09/2022 | £0.6m |
University College London | A 5 year prospective follow-up clinical and imaging investigation of demyelinating clinically isolated syndrome (CIS) | 01/09/2019 | 31/08/2023 | £0.8m |
Imperial College London | Regulated proteolysis of p62/SQSTM1, nutrient-sensing and human disease | 01/02/2020 | 31/01/2023 | £0.5m |
University of Edinburgh | Investigating the molecular mechanisms of mutant C9orf72 human iPSC-derived astrocyte-mediated motor neuron deficits | 01/08/2019 | 31/01/2022 | £0.2m |
Newcastle University | Novel MRI Biomarkers in Neuromuscular Disease | 01/09/2019 | 31/08/2022 | £0.1m |
The National Institute for Health Research (NIHR) funded no Motor Neurone Disease-related projects during this period.
Further details of all projects funded by UK Research and Innovation (UKRI), which MRC has been integrated into, can be found at https://gtr.ukri.org/.
Asked by: Jessica Morden (Labour - Newport East)
Question to the Department for Business, Energy and Industrial Strategy:
To ask the Secretary of State for Business, Energy and Industrial Strategy, which Motor Neurone Disease-related projects were funded by the (a) Medical Research Council and (b) National Institute for Health Research in (i) 2018-19 and (ii) 2019-20.
Answered by Amanda Solloway - Government Whip, Lord Commissioner of HM Treasury
The Medical Research Council (MRC) and the National Institute for Health Research (NIHR) have funded the following number of Motor Neurone Disease-related projects, started in 2018-19 and 2019-2020.
| 2018-2019 | 2019-2020 |
MRC | 10 | 7 |
NIHR | 3 | 0 |
Asked by: Jessica Morden (Labour - Newport East)
Question to the Department for Business, Energy and Industrial Strategy:
To ask the Secretary of State for Business, Energy and Industrial Strategy, what steps his Department is taking to support research on motor neurone disease.
Answered by Amanda Solloway - Government Whip, Lord Commissioner of HM Treasury
In 2019/20, UK Research and Innovation (UKRI), through the Medical Research Council (MRC), spent around £13.4 million on Motor Neurone Disease (MND) research. This included research which aims to increase our understanding of the causes and genetic mechanisms of MND and Amyotrophic Lateral Sclerosis (ALS) a form of MND. Over 5 years (2015/16 - 2019/20) MRC expenditure relevant to MND and ALS totalled £45 million.
In addition, UKRI, through the Biotechnology and Biological Sciences Research Council, supports a diverse portfolio of neuroscience research and innovation totalling around £30 million per annum. This work may underpin MND research by furthering current understanding of: the structure and function of the nervous system; cell biology and genetics; mental processes including learning and memory, and neurodegeneration as a result of normal ageing. Their portfolio of funded research also includes awards seeking to understand the biology of neuromuscular systems and motor control which has underpinning relevance to MND has an average annual spend of £1.2 million.
Additionally, the Department of Health and Social Care (DHSC) funds research through the National Institute for Health Research (NIHR). It is not usual practice to ring-fence funding for particular topics or conditions. The NIHR welcomes funding on applications for research into any aspect of human health, including MND. Applications are subject to peer review and judged on 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.
Over the past five years, DHSC has spent over £9 million on MND research through NIHR programmes and infrastructure. In 2018-19 alone, the NIHR invested £2.2 million in MND research through the NIHR research programmes and the NIHR Clinical Research Network. Additionally, the NIHR research infrastructure supported 73 research studies and trials on MND in 2018-19.
Furthermore, you be interested to hear about the NIHR Sheffield Biomedical Research Centre which has a research theme dedicated to MND. Further information on the AMBRoSIA study can be found at:http://sheffieldbrc.nihr.ac.uk/research-themes/motor-neurone-disease/.
Asked by: Duncan Baker (Conservative - North Norfolk)
Question to the Department for Work and Pensions:
To ask the Secretary of State for Work and Pensions, whether her Department's review of how the welfare system works for people with a terminal illness includes an assessment of (a) the ability of people with motor neurone disease to access the special rules for terminal illness and (b) the potential merits of applying reforms to (i) the disability element of universal credit and (ii) personal independence payment.
Answered by Justin Tomlinson - Minister of State (Department for Energy Security and Net Zero)
In July 2019, the Secretary of State announced an in-depth evaluation of how the benefits system supports people nearing the end of their life. The evaluation included 3 strands of research:
- hearing directly from claimants and charities about their first-hand experiences;
- considering international evidence to find out what works in other nations and the support they provide; and
- reviewing current DWP performance to better understand how our Special Rules for Terminal Illness process operates and performs.
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, whether he has commissioned research into the connection between head injuries sustained through sport and and motor neurone disease.
Answered by Caroline Dinenage
The Department funds health research through the National Institute for Health Research (NIHR). The NIHR welcomes funding applications for research into any aspect of human health. However, the NIHR has not conducted any research into links between head injuries sustained through sport and motor neurone disease.
It is not usual practice to ring-fence funds for particular topics or conditions. 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. In all disease areas, the amount of NIHR funding depends on the volume and quality of scientific activity.
Asked by: Lord Dodds of Duncairn (Democratic Unionist Party - Life peer)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, how many Health Trusts have made available Head Up collars to patients with motor neurone disease.
Answered by Steve Brine
This data is not collected centrally. The provision of Head Up collars is a local matter overseen by clinical commissioning groups.
The Head Up Collar was designed, developed and produced by a project headed by the National Institute for Health Research. It was announced on 30 May 2018 that the neck collar would be made available on the National Health Service. At this time the neck support collar was being used with suitable patients at 25 NHS trusts. The announcement can be found via the following link:
Asked by: Lord Austin of Dudley (Non-affiliated - Life peer)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what recent assessment he has made of the adequacy of funding available for research into motor neurone disease research.
Answered by Caroline Dinenage
The Department funds research mainly through the National Institute for Health Research (NIHR). The usual practice of the NIHR and other research funders is not to ring-fence funds for expenditure on particular topics. The NIHR welcomes funding applications for research into any aspect of human health, including motor neurone disease (MND). In 2016-17, the NIHR invested £4.58 million into MND and closely-related conditions research.
The NIHR Research Infrastructure supported 23 studies and trials on MND and closely-related conditions in the NIHR Biomedical Research Centres, Units and other research infrastructure during 2016-17. The majority of these studies have been funded by research charities including the Motor Neurone Disease Association, other research funders and the life sciences industry. In April 2018, the NIHR Clinical Research Network was supporting 19 non-commercial studies and clinical trials on MND and closely-related conditions.
Asked by: Lord Dodds of Duncairn (Democratic Unionist Party - Life peer)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what progress has been made on the development of treatments for motor neurone disease.
Answered by Steve Brine
Treatment for motor neurone disease (MND) can include a range of approaches such as counselling and emotional support, respiratory care, speech and language therapy, physiotherapy, respiratory secretion management, neurorehabilitation, physiotherapy and palliative care. Whilst drugs can be used for symptom management, riluzole is the only pharmacological drug licensed in the United Kingdom to slow the progression of MND.
Through the National Institute for Health Research (NIHR), we are investing over £1 billion a year in health research. In 2016-17, the NIHR invested £4.58 million to fund and support a range of research studies and infrastructure with a focus on MND and closely-related conditions. Current research falls in to three broad categories:
- Drugs that will slow down or cure MND;
- Improving care, symptom management and quality of life for people with MND; and
- Work to better categorise patients with MND so that treatments can be personalised.
Examples of drug research include the first gene therapy studies for a type of MND that runs in families, and a multicentre academic European Union and MND Association funded study of interleukin-2 to assess whether it can slow progression by reducing the immune system response.
The NIHR welcomes funding applications for research into any aspect of human health, 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.
The Medicines and Healthcare products Regulatory Authority has also advised that it is aware of five active clinical trials into treatments for MND.