Informed Consent / Account Creation

 

Informed Consent

For the purpose of this document “you” and “your” refers to the registrant, either the individual affected by myotonic dystrophy (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. The Registry has been fully explained to me. I understand the “Understanding My Participation” section and the Registry 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

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. 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 de-identified, 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 anonymous information to be transferred to other registries and databases?

* 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?

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5. Researchers may contact The Registry with 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 you may 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 information you provide in The Registry is complete, accurate and up-to-date. The Registry Coordinator will contact you after you complete the survey to gather any missing or incomplete information, and then at least once a year to ask about changes in your medical condition. Do you give us permission to contact you for this information?

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7. Information you provide will be provided to the owner of The Registry, MDF, to enable them to contact you and provide you with additional support if you desire. Do you give us permission to share your information with MDF?

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8. I understand the risks and benefits of participation and I agree to participate in The Registry.

* This Field is required
Yes

 

Your First Name:
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Your Last Name:
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Title:
Your Relationship to Affected Individual:
* This Field is required Information for: Your Relationship to Affected Individual : <p>
	Please tell us how you are related to the Affected Individual.</p>
E-mail / Re-enter 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. * This Field is required Information for: Verify 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
Did someone recommend that you join the Registry?:
The Registry member who recommends the most people by September 1st will win a prize.
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I agree to the Terms and Conditions

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