Registration

Informed Consent

For the purpose of this document “you” and “your” refers to the registrant, either the individual affected by Dup 15q (affected individual) or the parent, guardian or family member providing the information on behalf of the affected individual (the person legally responsible for the care and maintenance of the affected individual).

1. Your information will be saved in the Registry using a code. The code is used so others don’t know who you are. The Registry has processes in place to protect your identity. The Registry may share your coded information with other registries or databases. This information may be used for research or to plan clinical trials. Do you give your permission for your information to be transferred to other registries and databases?

* This Field is required
Yes

2. Your participation in this project is entirely voluntary. Should you change your mind and wish to withdraw your data from The Registry, you will be free to do so without having to provide any explanation. Do you understand this?

* This Field is required
Yes

3. The Registry has been fully explained to me. I understand the “Understanding my participation”and informed consent form. I also know how to access this document in the future if I want to review it. I have had the opportunity to ask questions of The Registry Coordinator. All my questions have been answered to my satisfaction.

* This Field is required
Yes

4. If researchers learn anything interesting about your condition, do you want to be contacted by the Registry with this information?

* This Field is required

5. The Registry may get information about a clinical trial that you might be eligible for. Do you want to be contacted with this information?
(Please note that even if the coordinators of a clinical trial believe that you might be eligible for the trial, based on the data about you stored in The Registry, it is still possible that later on it will turn out that you do not meet the trial inclusion criteria after all. Please also be aware that if we inform you about the existence of a trial, this does not imply that we endorse it. In order to participate in any trial, you will need to fill out a separate informed consent form.)

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6. It is important that the Registry information is up to date. We will contact you once a year to ask about changes in your medical condition. We will also send you forms each year to fill out. Do you give us permission to contact you for this information?

* This Field is required

7. I understand the risks and benefits of participations and I agree to participate in The Registry

* This Field is required
Yes

8. If you participated in the seizure survey in collaboration with Elwyn, your genetic records were released to Elwyn to gain access to the survey. Do you allow Elwyn to release your genetic report to the registry, to be used only for the purposes of this registry? If you agree, your child’s report will be uploaded to your file.

Name of Person Creating Account
To begin the registration process, please create a user account below. Once an administrator has approved your account, you will receive an email asking you to log into the system to complete the registration process and provide information about the affected person.


Your First Name:
* This Field is required Information for: Your First Name : Your first name, or the primary contact for the registrant.  If you are a parent registering a child, this is your name, NOT your child's name.
Last Name:
* This Field is required
Email:
* 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.
Relation to Patient:
* This Field is required Information for: Your Relation to Affected Person : <p>
	Please tell us how you are related to the patient.</p>
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:
* 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

Contact


Address:
City:
State:
Province (if outside USA):
Information for: Province (if not USA) : <p>
	For non-USA addresses</p>
Zip/postal Code:
* This Field is required
Alternate Email:
Country:
* This Field is required
Home Phone:
Cellphone:
Second Phone:
* This Field is required
Accept Terms and Conditions

 
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