DEBRA Ireland has an entrepreneurial spirit at its core when it comes to research. We kick-start research programmes through funding and use our other major currency, influence, to make research happen faster and better. We are currently supporting research into various aspects of EB in Ireland. Unfortunately, due to the departure of the lead researcher, it has not been possible to continue a project focused on itch in EB, in UCD. A full refund has been received from UCD however and we are committed to substantially increasing our investment in research over the next 3 years. We also lead three international initiatives:
- International patient registry
We are working to develop an international patient registry which will move us from paper to electronic medical records and will allow us to capture important data about EB. Data is the key that will unlock many doors – more research, better understanding of EB and better care.
- Help with healthcare
When it comes to a disease as rare and complex as EB, being a healthcare professional can be a lonely and scary place. We are developing guidelines on how to care for someone with EB, covering a range of clinical areas from diagnosis to nutrition. We have assembled 10 (and counting) international panels of experts and patients to actively pull evidence out of depths of scientific journals and to push it into the clinic, through rigorously developed guidelines.
- Keeping research real
Involving patients in the planning and undertaking of health research is important to ensure its success. We are leading an international initiative to bring the patient voice into decision-making about where EB research funding goes. Their views help to make sure that the research that is most important to them gets funded and they provide valuable insight into how to facilitate patients participating in clinical research.