Registration
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Account Registration

Informed Consent

Phelan-McDermid Syndrome International Registry
Informed Consent for Participation

For the purpose of this document "you," "your," "me," and "I," refers to the registrant, either the individual affected by PMS/Shank3 (the patient) or the parent, guardian or family member providing the information on behalf of the patient.

 

Registrant

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2. When you create an account in the Registry, you will be assigned a unique numeric identifier that will be used in place of your personal, identifying information. This code allows researchers to access information you have entered into the Registry without knowing who you are.


I give permission for the information I share in the Registry to be provided to other registries or databases using my unique numeric identifier. This includes sharing information for the purposes of participating in the Phelan-McDermid Syndrome Data Network (PMS_DN) with Harvard Medical School.
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* This Field is required Information for: 4. I would like to be contacted by the Foundation if I, or my family member, becomes eligible for a clinical trial. : <p><em style="font-size: 12px;">(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.)</em></p>
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Please create an account by filling out the information about yourself, (the registrant - not the patient).

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* 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: Confirm Email : <p>Please confirm your email address by entering it again.</p>
* This Field is required Information for: Your Relation to Affected Person : <p>Please tell us how you are related to the patient.</p>
* 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
* This Field is required Information for: Password : Please enter a valid password. No spaces, at least 8 characters and contain at least 1 lower-case letter, 1 upper-case letter, 1 number, and 1 symbol character
* This Field is required Information for: Re-enter Password : Please enter a valid password. No spaces, at least 8 characters and contain at least 1 lower-case letter, 1 upper-case letter, 1 number, and 1 symbol character

Please enter the code below to confirm your acceptance

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