Motor Neurone Disease: Research
The question
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
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.
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