Our research impact

9 August 2024

We take great pride in the research projects we support. They generate breakthroughs in the understanding of muscle wasting and weakening conditions, leading to better management of muscle wasting conditions and the development of treatments.

Each year, following a thorough process, we award on average 10 new grants to research teams so they can study some of the over 60 conditions we cover. We review these grants on a yearly basis to make sure they’re progressing well. We also ask our researchers to tell us about the impact of their projects each year. This can include information about scientific papers, how their research is influencing policy and clinical care, and whether our funding has helped them engage with the public, for example, by giving talks so that help people understand more about muscle wasting conditions.

Information is collected during the lifetime of a grant and for five years after it has finished.

Here are some interesting facts and figures about the research we support.

A total of 190 scientific papers were published between 2019 and 2023 by 21 research teams we funded – these linked to 35 different grants. Scientific papers show the results the researchers uncovered during their studies. They help other researchers know how they can improve their current work or build on the work published in some of these papers.

Example: every month, we bring you a summary of a recent scientific paper published by teams funded by us. These summaries are written by our Research Communications Volunteers. This is a group of wonderful people with experience in research or science, who help us deliver latest updates in research into muscle wasting conditions.

Read our latest research summary about diagnosing dysferlinopathies by MRI

Example: every month, we bring you a summary of a recent scientific paper published by teams funded by us. These summaries are written by our Research Communications Volunteers. This is a group of wonderful people with experience in research or science, who help us deliver latest updates in research into muscle wasting conditions. Read our latest research summary about diagnosing dysferlinopathies by MRI here.

Collaborations happen when researchers, clinicians and other specialists from different institutions, come together to make research better. They do this through sharing their experience, insight and expertise. These collaborations can include partnerships, networks, and multi-centre studies. No two researchers are the same, and by collaborating they bring together their, often different, strengths and expertise, in order for that research to be more detailed, or across different disciplines (for example, a researcher with expertise in genetics might need to collaborate with computer biologists to help them understand the results their research shows).

Over 75% of our research funded grants in the last 10 years were based on close collaborations between teams in the UK and across the world.

In 2024, 20 researchers told us about 75 collaborations they have been involved in this year. This represents an increase of 44% compared to what our researchers told us in 2023.

Example: Professor Francesco Muntoni and his team at UCL worked closely with Professor Matthew Wood and his team at University of Oxford to develop special molecular patches for treatment of Collagen VI-related congenital muscular dystrophy.

It’s important that the research we support is carried on further. To do this, our researchers need more funding. Sometimes these grants are from us and sometimes research teams will apply to other funders. Often the research we fund can help leverage further funding in the future, so that particular research can move forward. Likewise, in order to bring basic research results closer to the clinic, further funding is very important.

Our researchers reported receiving further funding on 40% of grants we had funded.

This funding comes from pharmaceutical companies, government bodies, charities and others.

Example: In 2019, we funded Professor Peter Zammit for his work on DUX4 and FSHD (read more about the study here). In 2023 and 2024 he was awarded three grants that come to around £300,000 by other organisations to continue this work.

Engagement activities are important for us because they help spread the word about the research we fund. These activities aim at engaging families, carers, fundraisers, donors, the general public and other groups of people who are not directly involved in research through talks, news articles or stories for non-academic magazines. This is a great way of raising awareness of muscle wasting conditions, as well as educating relevant audiences about rare conditions.

In 2024, 11 researchers funded by us were involved in 74 engagement activities. Between them, these 11 researchers held 18 grants funded by us.

Example: Professor Jordi Diaz-Manera presenting his work as part of our Virtual Information Seminars.

We also want to know if, and how, the research we fund influences various policy areas, such as health or social care. These policies can help improve the quality of lives or the access to care for people living with muscle wasting conditions.

15 influences on policy were reported in 2024 across seven grants held by seven researchers.

Example: Professor Ros Quinlivan, a lead on the Adult NorthStar Network, reported noticeable improvements in Duchenne muscular dystrophy (DMD) care across the UK. Before the Adult NorthStar project grant was awarded, only University College London Hospital (UCLH) and Newcastle prescribed corticosteroids to adults with DMD. Now all participating centres continue steroid treatment. We have also seen a growing level of engagement and commitment to improve care for adults with DMD across the UK.

We’re grateful to our researchers for their time and effort to help us collect this information. We’re committed to funding the best research, which we hope will change and improve lives now and in the future.