We want to find and fund treatments to lessen the day-to-day impact of EB and cures to eradicate EB.

We will consider project grant applications for research in any field relevant to the many symptoms of EB. We’ve spent 20 million pounds in the last 40 years, funding research nationally and internationally to bring us closer to a future where no one suffers from EB.

Our research funding is awarded through a rigorous process that includes our Charitable Purposes Committee (CPC), member voice, independent external reviewers and our Scientific Grants Advisory Panel. We are supported and audited through our membership of the Association of Medical Research Charities (AMRC) which ensures that we invest in projects of the highest scientific merit that will give the best chance of leading to improvements and breakthroughs in understanding and treatment of EB.

Contents:

• Grant award process
• Peer reviews
• DEBRA members help us decide what research we fund
• DEBRA UK scientific grants advisory panel
• Association of Medical Research Charities (AMRC)
• Grant maintenance
• Policies and useful links

 

DEBRA UK research grant award process

Diagram to show DEBRA's research grant award process.

Applications that meet the criteria laid out in our research strategy will be subject to review and consideration by the DEBRA UK Scientific Grants Advisory Panel for expert scientific opinion and by our Charitable Purposes Committee (CPC) which includes member representation. Their recommendations will be presented to the trustees of DEBRA UK for final decision.

 

Peer reviews

Peer reviewers will be experts in an appropriate field and declare no organisational, collaborative, personal or other conflict of interest. Applicants will have the opportunity to see and respond to anonymised reviews as constructive comments can be used to improve the research application. We are grateful to all those researchers who take the time to contribute to DEBRA UK in this way. If you are interested in reading applications and providing expert reviews for us, please leave your details.

I would like to highlight how important it is for us to read these comments and improve our project design and data analysis, maximising the outputs of the proposed project. Not all charities share these comments and I wish this was a common practice across funding bodies.

 Research grant applicant, 2023

 

DEBRA members help us decide what research we fund

DEBRA UK members who are experts by experience due to their lived experience of EB will be invited to provide a score and comments based on the Abstract and Value to EB sections of the application which should be understandable to a lay audience. Part or all of these sections may also be shared on our website if the application is approved. We are grateful to all our members who contribute their expertise in this way. If you are a member of DEBRA UK and would like to read application summaries and provide a score and comments for us as an expert by experience, you do not need to have any scientific background at all, just a willingness to share your thoughts. Find out more and leave your details and we will contact you with the next opportunity to be involved. You will also be asked to declare any conflict of interest that might include working in EB research yourself or for a pharmaceutical company that manufactures potential EB treatments.

 

Scientific Grants Advisory Panel

We are grateful to these senior experts in their fields who contribute their time to DEBRA UK so that our funds can be most wisely spent on only the best research projects.

DEBRA UK Scientific Grants Advisory Panel members are required to adhere to the panel’s Terms of Reference and Conflict of Interest policy.

The research advisory panel is chaired by Professor Edel O’Toole and consists of experts in various fields relevant to the symptoms of EB who will consider applications, reviews and applicant responses/improvements in making their recommendations to DEBRA UK.

 

Association of Medical Research Charities (AMRC)

We are proud members of the Association of Medical Research Charities (AMRC) which provides guidance and training to support us to choose the best research projects and carries out regular audits of our research grant awards processes. Our process ensures new research projects build on existing knowledge, which helps us to only invest in projects that give the best chance of breakthroughs leading to change.

 

Grant maintenance

Successful applicants for DEBRA UK funding will be paid quarterly in arrears on receipt of an appropriate invoice.

An annual progress report will include scientific, financial and lay reports on reaching aims laid out in the original application so that our funders and members can be kept up to date on current research.

Copies of all published papers, submitted manuscripts, conference abstracts and posters should be sent to DEBRA UK throughout the grant period and thereafter when work funded by DEBRA UK is presented and funding from DEBRA UK acknowledged in these outputs.

At the end of the grant period, a final report will be required, including a lay summary, along with a list of publications in peer-reviewed journals.

Funding cannot be extended and ‘top ups’ will not be provided so it is important to define viable outcomes for the period of the grant.

 

Policies and links

• Terms and conditions of our grant awards
• Policy on use of animals in research
• National Centre for the 3Rs
• Conflicts of interest in research- available by emailing [email protected].
• Additional DEBRA UK policies
• AMRC’s principles of peer review
• Our research strategy