Before you begin entering information into the Registry, we want to assure you that your participation is completely voluntary and confidential. You may stop entering information and end your participation in the Registry at any time. You may also suspend your participation, and later re-visit the Registry using the username and password you will create when you register to continue where you left off.
All the personal information you provide will be kept strictly confidential by EBCare, LLC. Only de-identified data will be made available to qualified researchers. No information that would make it possible for anyone to identify you will be used in any presentations or written reports that utilize data from the Registry.
If you have any medical, research, treatment or patient referral questions, contact a nurse educator or staff member at your nearest DEBRA office. To locate your nearest DEBRA office, please visit www.debra-international.org.
If you have questions about the EBCare Registry please email the Registry Coordinator at:
Please create your account by completing the form below. Please enter your name whether you are the affected person with EB, or a caregiver. You will be asked to provide the affected person's name after creating your account.
By checking the consent box below, you acknowledge that you have reviewed the EBCare Registry Information Sheet and that you are providing consent to participate in the Registry and for your responses to be stripped of identifiers and provided to qualified researchers.
Does the affected person authorize and consent to contact from companies that are developing products for the treatment of EB?
Finally, please type in the characters from the box below into the space provided to validate your registration.