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