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 incentivise research into Inclusion Body Myositis and other rare progressive muscle disorders.

The Department funds research through the National Institute for Health and Care Research (NIHR). The NIHR funds clinical, public health, and social care research and works in partnership with the National Health Service, universities, local government, other research funders, patients, and the public, and also funds global health research. NIHR funding is not typically ringfenced for specific conditions. Instead, research proposals are assessed through an open, competitive peer review, with funding decisions made on the basis of scientific quality, the importance of the research question to patients and health and care services, and value for money. This approach ensures that the strongest proposals with the greatest potential impact are supported.

In this disease area over the last five financial years, from 2020/21 to 2024/25, the Department committed £40.4 million on new research projects alongside supporting infrastructure into inclusion body myositis and other rare progressive muscle disorders. This has included clinical trials and novel therapies at NIHR clinical research facilities and NIHR biomedical research centres looking at gene silencing, micro-dystrophin, and disease-modifying therapies for neuromuscular condition.

The NIHR’s Be Part of Research allows people to find and take part in health and care research, and shows that there are currently eight studies where researchers are actively looking for participants in several aspects of muscle disorders. Further information on Be Part of Research is available at the following link:

https://bepartofresearch.nihr.ac.uk/