How we fund research

How we fund research l.jacobs@muscu… Thu, 05/06/2021 - 16:07

The selection process

Scientists who would like to apply to us for a grant must complete a scientific and a lay application.

The scientific application

A detailed description of the project, its related costs, and any ethical considerations, such as the use of animals or human samples.

This goes to peer reviewers all over the world who are experts in the field of muscle-wasting conditions. They provide a detailed and objective critique of whether the project appears to be worthwhile, is achievable in the proposed time frame and contains any weaknesses in the experimental design.

The lay application

Less detailed and written in a way that someone who is not an expert in the field can understand.

This application goes to our Lay Research Panel, a group of people, most of whom are affected (either directly or indirectly) by a muscle-wasting condition. It also includes a care advisor and a physiotherapist. A scientific advisor attends their meetings to answer any scientific questions.

This group does not judge the science behind the projects. Its job is to assess the relevance and importance of each project for people affected by muscle-wasting conditions.

Our Medical Research Committee

Both applications than go to our Medical Research Committee together with the scientific and lay feedback. This committee is made up of 10 – 12 experts in the field of muscle-wasting conditions (scientists and clinicians) and two members of the Lay Research Panel.

The committee meets once a year to discuss and score the applications. It makes a recommendation to the Board of Trustees about which projects should be funded.

For more information about the process, contact our research team.

Lay Research Panel

Lay Research Panel l.jacobs@muscu… Mon, 05/17/2021 - 16:54

The panel has devised an application form for the scientists to complete when applying for a grant, which contains all the questions that they feel are most important to them. They consider and discuss each application carefully, not judging the science, but prioritising each application based on the benefit to people with muscle-wasting conditions.

The panel meets twice a year, in autumn and spring, to review the grants programme and discuss any grant applications that we have received.  A scientific advisor is always on-hand during this funding decisions meeting to answer any scientific questions the Panel members may have.

The panel provides feedback on all the grant applications to the Medical Research Committee, our committee of scientific and clinical experts. Two members of the Lay Research Panel attend the Medical Research Committee meetings to share this feedback in the discussions. They also have voting rights so will have a direct influence on the grants that are funded.

The Lay Research Panel also provides input into our research strategy.

Alex Williamson (pictured), who has Charcot-Marie-Tooth disease (CMT), is the previous chair of the Panel:

Normally, we meet twice a year: once to review and rate the lay summaries of the research proposals to see if they make sense to us, and then to see which were successful and why. We score the proposals based on how valuable and exciting they are from a lay perspective. By giving the patients’ perspectives at the scientific panel, the vice chair and and chair can also influence their deliberations.

I feel the Panel makes a useful contribution to the selection of research to be funded. We’ve also been influential in getting quality of life research taken seriously. Whilst breakthroughs in treatments and cures are vital, so many of us have to live with the disease and need our quality of life improved in various ways.

The current research landscape is exciting! We seem quite close to some major breakthroughs and I get so thrilled when we see proposals for clinical trials.

If you are interested in getting involved, please email us at research@musculardystrophyuk.org 

Our position on animal research

Our position on animal research l.jacobs@muscu… Fri, 05/21/2021 - 15:38

Muscular Dystrophy UK is committed to the three Rs approach:

  • Replace the use of animals with alternative techniques, or avoid the use of animals altogether.
  • Reduce the number of animals used to a minimum, to obtain information from fewer animals or more information from the same number of animals.
  • Refine the way experiments are carried out, to make sure animals suffer as little as possible. This includes better housing and improvements to procedures which minimise pain and suffering and/or improve animal welfare.