Asked by: Holly Mumby-Croft (Conservative - Scunthorpe)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what assessment his Department has made of potential effective treatments for MND; and what assessment he has made of the impact of funding levels on research into effective treatments for MND.
Answered by Gillian Keegan - Secretary of State for Education
There have been no specific assessments. The National Institute for Health and Care Excellence (NICE) has published a clinical guideline on the diagnosis and management of motor neurone disease (MND). This aims to improve care from the time of diagnosis and covers information and support, organisation of care, managing symptoms and preparing for end of life care. In addition, NICE has published technology appraisals guidance on riluzole, which is recommended for the treatment of individuals with the amyotrophic lateral sclerosis form of MND.
We have committed £50 million for MND research over the next five years. New, innovative projects will help researchers to better understand the disease and its related conditions, develop and test treatments and improve care for those living with MND. We will also establish the National Institute for Health Research’s MND Research Unit to coordinate innovative research applications with the ultimate goal of finding a cure.
Asked by: Barry Sheerman (Labour (Co-op) - Huddersfield)
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 (a) improve support for those with Motor Neurone Disease and (b) increase research in the area of diagnosis and treatment.
Answered by Gillian Keegan - Secretary of State for Education
Care for patients with Motor Neurone Disease (MND) involves a multi-disciplinary approach from MND specialists. NHS England commissions specialised care from 25 specialised neurological treatment centres across England. NHS England has published a service specification setting out what providers must have in place to deliver specialised neurological care. The National Institute for Health and Care Excellence guideline, ‘Motor neurone disease: assessment and management’, contains guidance for clinicians in the diagnosis of MND. Clinicians and commissioners should continue to take this guidance into account, alongside prioritisation advice provided by the Association of British Neurologists and NHS England and NHS Improvement.
We have committed £50 million for MND research over the next five years. New, innovative projects will help researchers to better understand the disease and its related conditions, develop and test treatments and improve care for those living with MND. We will also establish the National Institute for Health Research’s MND Research Unit to coordinate innovative research applications.
Asked by: Kenny MacAskill (Alba Party - East Lothian)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, with reference to his Department's announcement that £375 million will be made available for research into neurodegenerative diseases, published on 14 November 2021, whether the new Motor Neurone Disease Research Unit will focus on human relevant methods such as the use of advanced cultures of human cells and tissues, artificial intelligence and organ-on-a-chip technology.
Answered by Maria Caulfield - Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)
The Government delivers research on motor neurone disease (MND) through the Department of Health and Social Care, via the National Institute for Health Research (NIHR) and through the Department of Business, Energy and Industrial Strategy, via UK Research and Innovation (UKRI). The Government has committed £50 million for MND research over the next five years through the NIHR and UKRI and to establish the NIHR’s MND Research Unit to coordinate innovative research applications.
The NIHR and UKRI rely on researchers submitting high-quality applications to access funding. The usual practice of the NIHR and UKRI is not to ring-fence funds for expenditure on particular topics, such as research on advanced cultures of human cells and tissues. All 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. We are launching a MND partnership call across Government and charity funders to support collaboration and accelerate the delivery of new treatments.
The NIHR’s funding is focused on translational, clinical and applied health and care research. Research on the use of advanced cultures of human cells and tissues and organ-on-a-chip technology will therefore not be in the remit of the NIHR’s MND Research Unit. The NIHR has funding streams to support health and care research that involves artificial intelligence.
Asked by: Kenny MacAskill (Alba Party - East Lothian)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, with reference to his Department's announcement that £375 million will be made available for research into neurodegenerative diseases, published on 14 November 2021, how much and what proportion of that funding will support research that uses New Approach Methodologies (NAMs), such as the use of advanced cultures of human cells and tissues, artificial intelligence and organ-on-a-chip technology.
Answered by Maria Caulfield - Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)
The Government delivers research on motor neurone disease (MND) through the Department of Health and Social Care, via the National Institute for Health Research (NIHR) and through the Department of Business, Energy and Industrial Strategy, via UK Research and Innovation (UKRI). The Government has committed £50 million for MND research over the next five years through the NIHR and UKRI and to establish the NIHR’s MND Research Unit to coordinate innovative research applications.
The NIHR and UKRI rely on researchers submitting high-quality applications to access funding. The usual practice of the NIHR and UKRI is not to ring-fence funds for expenditure on particular topics, such as research on advanced cultures of human cells and tissues. All 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. We are launching a MND partnership call across Government and charity funders to support collaboration and accelerate the delivery of new treatments.
The NIHR’s funding is focused on translational, clinical and applied health and care research. Research on the use of advanced cultures of human cells and tissues and organ-on-a-chip technology will therefore not be in the remit of the NIHR’s MND Research Unit. The NIHR has funding streams to support health and care research that involves artificial intelligence.
Asked by: Rupa Huq (Labour - Ealing Central and Acton)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if he will make it his policy to increase the amount of funding allocated to research on Motor Neurone Disease.
Answered by Edward Argar - Minister of State (Ministry of Justice)
The Government is strongly committed to supporting research into dementia and neurodegeneration, including motor neurone disease (MND). We are currently working on ways to significantly boost further research on dementia and neurodegeneration. The Department of Health and Social Care funds research on health and social care 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 applications for research into any aspect of human health, including MND. 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: Catherine West (Labour - Hornsey and Wood Green)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if he will increase research funding for motor neurone disease.
Answered by Edward Argar - Minister of State (Ministry of Justice)
The Department funds research on health and social care through the National Institute for Health Research (NIHR). While it is not usual practice to ring-fence funding for particular topics or conditions, the NIHR welcomes funding applications for research into any aspect of human health, including motor neurone disease. 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: Drew Hendry (Scottish National Party - Inverness, Nairn, Badenoch and Strathspey)
Question to the Department for Business, Energy and Industrial Strategy:
To ask the Secretary of State for Business, Energy and Industrial Strategy, what assessment his Department has made of the potential merits of a dedicated research and development funding allocation for a virtual motor neurone disease translational research institute.
Answered by George Freeman
This Government is committed to supporting research into dementia and neurodegeneration, including motor neurone disease (MND). Last fiscal year, UKRI spent £15.9 million on MND research. This builds on wider funding for medical research charities including £204 million Research England funding in AY 20-21, the charity research support funding element of Quality-related Research, and UKRI’s funding for the Crick Institute. The UK Dementia Research Institute, founded with £190 million of government funding through UKRI, already includes research on scientific understanding of motor neurone disease as a neurodegenerative condition.
Future funding decisions will be subject to the outcome of the Spending Review 2021.
Asked by: Tony Lloyd (Labour - Rochdale)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 29 July 2021 to Question 35705 on Motor Neurone Disease: Drugs, if he will provide details of the projects relating to Motor Neurone Disease that were funded by the National Institute for Health Research in each of the years between 2015 and 2020.
Answered by Maria Caulfield - Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)
The information requested is shown in the following table. The National Institute for Health Research (NIHR) is also funding research on motor neurone disease through the NIHR’s research infrastructure, including the NIHR Sheffield Biomedical Research Centre. However this information is not available at individual study level.
Year | Project |
2015/16 | Telehealth in Motor Neurone Disease: the TiM trial. A randomised controlled pilot study of the use of the TiM system to deliver highly specialised care to patients and carers of those living with motor neurone disease. * Evaluation of the clinical and cost-effectiveness of Short-term Integrated Palliative Care Services (SIPC) to OPTimise CARE for people with advanced longterm Neurological conditions (OPTCARE Neuro) * |
2016/17 | Head up: The development of a novel cervical orthosis to support neck weakness due to neurological disease. * Telehealth in Motor Neurone Disease: the TiM trial. A randomised controlled pilot study of the use of the TiM system to deliver highly specialised care to patients and carers of those living with motor neurone disease. * |
2017/18 | Telehealth in Motor Neurone Disease: the TiM trial. A randomised controlled pilot study of the use of the TiM system to deliver highly specialised care to patients and carers of those living with motor neurone disease. * Evaluation of the clinical and cost-effectiveness of Short-term Integrated Palliative Care Services (SIPC) to OPTimise CARE for people with advanced longterm Neurological conditions (OPTCARE Neuro) * A feasibility study and randomised controlled trial of acceptance and COMmitment therapy for people with Motor nEuroN Disease (COMMEND) * |
2018/19 | Telehealth in Motor Neurone Disease: the TiM trial. A randomised controlled pilot study of the use of the TiM system to deliver highly specialised care to patients and carers of those living with motor neurone disease. * A feasibility study and randomised controlled trial of acceptance and COMmitment therapy for people with Motor nEuroN Disease (COMMEND) * Nusinersen for treating infant or child spinal muscular atrophy [ID1069] A programme to develop and evaluate a complex intervention to achieve a high calorie diet for people with Amyotrophic Lateral Sclerosis (HighCALS) * Enhancing the efficacy of non-invasive ventilation for patients with motor neurone disease: Synthesising the evidence, mapping the services and translating the evidence into clinical practice. * |
2019/20 | A feasibility study and randomised controlled trial of acceptance and COMmitment therapy for people with Motor nEuroN Disease (COMMEND) * A programme to develop and evaluate a complex intervention to achieve a high calorie diet for people with Amyotrophic Lateral Sclerosis (HighCALS) * Enhancing the efficacy of non-invasive ventilation for patients with motor neurone disease: Synthesising the evidence, mapping the services and translating the evidence into clinical practice. * Onasemnogene abeparvovec for treating spinal muscular atrophy type 1 [ID1473] - Part 1 |
2020/21 | A feasibility study and randomised controlled trial of acceptance and COMmitment therapy for people with Motor nEuroN Disease (COMMEND) * A programme to develop and evaluate a complex intervention to achieve a high calorie diet for people with Amyotrophic Lateral Sclerosis (HighCALS) * Enhancing the efficacy of non-invasive ventilation for patients with motor neurone disease: Synthesising the evidence, mapping the services and translating the evidence into clinical practice. * Onasemnogene abeparvovec for treating spinal muscular atrophy type 1[ID1473] - Part 2 Risdiplam for treating spinal muscular atrophy [ID1631] |
Note:
* Project funded for multiple years spanning the period 2015-2020.
Asked by: Paul Girvan (Democratic Unionist Party - South Antrim)
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 benefits of increased investment in motor neurone disease research for other neurological conditions.
Answered by Maria Caulfield - Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)
No specific assessment has been made. The Government makes funding available for research but does not generally ring-fence funds for particular disease areas. Research proposals in all areas compete for the funding available. 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: Paul Girvan (Democratic Unionist Party - South Antrim)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if he will make it his policy to support the Spending Review submission from the Motor Neurone Disease Association, MND Scotland and the My Name’5 Doddie Foundation which calls for £50 million of funding for motor neurone disease-specific research.
Answered by Maria Caulfield - Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)
The next Spending Review will set out the Government’s spending plans for health and social care for future years.
Over the past five years, the Department has spent over £10 million on motor neurone disease (MND) research through the National Institute for Health Research. Additionally, UK Research and Innovation, through the Medical Research Council, has spent £49.5 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 increase further research on dementia and neurodegeneration including medical and care interventions.