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The more we know about epidermolysis bullosa (EB), the more progress we can make in developing effective treatments and services.
That’s why an EB registry has been established. This will create an invaluable pool of vital data which researchers can use to analyse trends, identify new treatment options and establish the effectiveness of treatments. Equally importantly, the EB Registry will help us spot gaps in services and better understand ways of improving the lives of people with the condition.
The Irish Epidermolysis Bullosa (EB) Registry was established in 2020 by the National and International Skin Registry (NSIR) with the support of Debra. The registry is designed to identify, collect, record, store and analyse information relating to the prevalence and incidence of EB in Ireland
As a rare disease, better information on the number of people living with EB, and their health is needed. The more information we have, the better support we can provide.
By collecting and analysing information on people with EB in Ireland, we can better understand their health and wellbeing, and the benefits of treatments provided.
The EB Registry helps collect and analyse health information of Irish EB patients. This data is collected at the patient visit to Our Lady’s Children’s Hospital Crumlin and St James Hospital, Dublin.
The information allows clinicians to examine how symptoms and treatments change over time and check whether EB treatments continue to work well and safely over many years.
The information could be used to provide an EB information service to governmental agencies, the health service, hospitals and health care professionals, and help improve planning and delivery of care and services for people with EB. It also provides an important source of information for future research.
The EB registry is an encounter-based registry, meaning that information will be recorded from each interaction for EB care with the EB team as part of their usual standard of care. The information collected by the Registry is private and anonymised.
It collects information on diagnosis, health status at each hospital visit, heights, weights, blood test results, procedures, medicines and treatments, health complications, healthcare service use and information about how the condition and treatments impact patients’ quality of live.
The EB Registry platform will be provided by software partners OpenApp. The OpenApp Registry™ is an open source platform for developing patient, disease and pharmaceutical drug registries, and its core technology has been deployed in multiple registries across Europe. The platform supports highly secure web based data collection, reporting, sharing and anonymisation of data.
The Registry collects medical information about each person’s type of EB. Participation is completely voluntary and can be revoked anytime. Any data that’s shared is anonymised so participants are only identifiable by their clinical staff and professional registry staff. The platform is fully GDPR compliant, the most stringent data protection regulation in the world.
Time and time again, Patient Registers have helped unlock breakthroughs in the treatment of different conditions. Now the EB Patient Register gives everyone with EB a chance to make a direct and valuable contribution in the global effort to understand this life-altering condition.
If you do decide to take part, you can find out more in multiple ways:
