Over 30 people from across Europe, including clinical leaders from the EB community, DEBRA representatives and experts in patient registries came to Dublin in July to discuss EB patient registries. Working with the Irish Skin Foundation we are progressing plans for an Irish EB patient registry and a network of EB registries across Europe.
Capturing data from patients (with their consent) in a patient registry offers enormous potential to improve lives. Patient registries can:
- enable match-making between patients desperate for a treatment and pharmaceutical companies looking for patients to test new therapies on.
- provide evidence to persuade the State to invest more resources where the need is greatest (you can imagine the conversation – ‘see here Minister, we have evidence to show that patients on this treatment require hospitalisation less’).
- allow patients to play a greater role in their own care. They say we only remember a fraction of what the doctor tells us but what if you could revisit the advice, through an app on your phone, for example?
We currently have no EB patient registry in Ireland but we are working closely with Prof. Alan Irvine and Dr. Dmitri Wall of Irish Skin Foundation to change that. As EB is a rare disease, the value of national registries in Ireland and elsewhere will be greatly strengthened if we can link them together in order to compare and share data (data that in this case has been anonymised to protect confidentiality).
With this in mind we hosted a meeting in Dublin in early June to discuss the future of EB registries. We brought together over 30 people from across Europe including clinical leaders from the EB community, DEBRA representatives and experts in patient registries. Click here for a short report on this on this very positive meeting.