EBCare Registry


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Registration and Consent

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.
 
Confidentiality
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.
 
Questions
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: This e-mail address is being protected from spambots. You need JavaScript enabled to view it .


Create Account
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.

Your First Name:
* This Field is required
Your Last Name:
* This Field is required
E-mail:
* This Field is required Information for: Email : Please enter a valid e-mail address. A confirmation email will be sent to this address upon registration.
Username:
* This Field is required Information for: Username : Please enter a valid username.  No spaces, at least 3 characters and contain 0-9,a-z,A-Z
Password / Re-enter password:
* This Field is required Information for: Password : Please enter a valid password.  No spaces, at least 6 characters and contain lower and upper-case letters, numbers and special signs * This Field is required Information for: Verify Password : Please enter a valid password.  No spaces, at least 6 characters and contain lower and upper-case letters, numbers and special signs

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.

* This Field is required
Does the affected person authorize and consent to have their doctor share medical results with this registry?
By clicking here, I certify that I have read the consent/authorization form, I understand, freely consent and agree to its content and that it is my intent to electronically sign the consent/authorization form and to authorize the collection, processing, use and disclosure of my PHI for the EBCare Registry.
* This Field is required
I have read the registry information sheet
* This Field is required
I agree to the terms and conditions

* This Field is required
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.

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