Global Registry for Inherited Neuropathies


 
           
Registration

Statement of Consent

For the purpose of this document “you” and “your” refers to the registrant, either the individual affected by Hereditary Neuropathy (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 patient information 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

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. This only applies to data in The Registry, not data already used in research studies. 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 may share your 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

4. If researchers learn something that is thought to have health implications for you, do you want to be contacted by the Registry with this information?

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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?

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7. Please indicate your relationship to this registry study:

If you are a parent or guardian consenting for a child(less than 18 years old in most states) and the child can understand the purpose of The Registry, he or she should either read this form or have the contents explained to him or her, ask any questions he or she may have, and agree to take part. Consent of a parent or guardian indicates that the child, if able, understands The Registry requirements and agrees to take part.
If you are an adult consenting on behalf of another adult with IN who can't consent for himself or herself, you should only enter that person in The Registry if you think he or she would agree to this.

8. I agree to participate in The Registry

* This Field is required
Yes

 

Your First Name: * This Field is required
Your Last Name: * This Field is required
Your Relationship to Participant: * This Field is required Information for: Your Relationship to Participant : <p>
	Please tell us how you are related to the participant.</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

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I agree to the terms and conditions

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