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EB Patient Registries
The more we know about Epidermolysis Bullosa (EB), the more progress we can make in developing effective treatments and services. That’s why a worldwide EB Patient Registry is now being 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 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 pseudo-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.