DEBRA UK's 2025 Application Clinic – подобряване на изследванията чрез включване на хора, засегнати от ЕБ

Research into treating EB symptoms aims to improve the lives of people affected by EB. But how do researchers decide what symptoms or treatments to study and what approaches would be acceptable to people taking part in studies and trials? How do we know what people living with EB want us to spend our precious funds researching? More and more, we are trying to involve our members in guiding the direction of EB research.

On 13 February 2025, we brought EB researchers and DEBRA UK members together online for our annual Application Clinic като част от our research grant award process.

The online meeting (held viz Zoom) lasted an hour and was split into three parts, with each researcher keeping their proposal confidential from the other researchers. They were asked to provide drafts of the plain language summaries of the application they are planning to submit to DEBRA UK this spring for members to examine in advance. These are the “Abstract” and “Value to EB” sections of the application form and are where researchers explain what they are planning to do and why they are planning to do it.

After our grant call closes at the end of March, these sections will be reviewed by members to помогнете ни да решим какво изследване да финансираме as part of our research grants award process. We encourage members at the Application Clinic to question the language used in these proposals to help avoid jargon and make it as clear as possible for people without a scientific background to review.

Our members additionally get the opportunity to meet researchers, influence the direction of their work on EB, and ask questions about what might be possible now and in the future. We hope this makes the sessions enjoyable and ИМАЛИ feedback from one member saying the “[researcher] was extremely interesting.”

Our Application Clinic is less about researchers describing their research, and more an opportunity for them to ask questions of people who might take part in their research, or benefit from it, in the future. We encourage researchers to ask questions like:

• “Would this number of clinic visits put you off?”
• “Would you prefer a treatment as an injection or a tablet?”
• “Would you rather complete a survey or give your views in a conversation?”
• “Could you take these measurements at home?”
• “Is there a need for something like this?”

It’s an opportunity to discuss the practicalities of their proposed project with the people who could benefit from it.

We hope that, in response to member comments, researchers will be able to adapt their plans and submit better applications for our research funding. Based on some of their feedback, it’s working!

“Great to hear feedback from different people and I will add these to our proposal.”

“It was really helpful to chat to the members…”

“So great to meet some of the members and hear their thoughts. Their feedback and questions were very helpful thank you.”

The deadline for 2025 research funding

The deadline to apply for our 2025 research funding is at the end of March, so there is time for researchers to take on board comments from our members at the Application Clinic before submitting their proposals. By involving members at the design stage, we hope that the applications we receive will be easier for our members to understand and review, and that the research we fund is as relevant to them as possible.

In April, our members have the opportunity to помогнете ни да решим какво изследване да финансираме by reviewing any or all of the applications submitted for our research funding. You can do this online in your own home and it takes around 15 minutes per application. The scores and comments we received from our members greatly enhance our awards process. Don’t worry, you do not need to have any scientific knowledge to take part in reviewing applications as a DEBRA UK member, but you will be asked to declare any conflicts of interest that might influence your opinion.

Being in a family living with EB gives you the expertise by experience that makes your insights and opinions invaluable to our research. Please consider taking part this year and help us decide what EB research to fund.

HELP US DECIDE WHAT RESEARCH WE FUND

Join our monthly Research and Health webinars

Our last Application Clinic was kept running to time, but the discussions went right up to the final minute. To hear more from EB researchers about the work they are doing, please come along to one of our monthly Research and Health webinars or listen to the recordings on our website.