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Fragile X Research Registry Member Update Form
fill out this form and click SUBMIT at the bottom of the page.
* Required fields
Name(s) of Registry Member(s):
Date(s) of Birth:
Contact Information
First contact (Parent/guardian or Adult Registry member)
First Name:
Last Name:
Relationship to member:
Address (Street or PO Box):
City*
State*
Zip Code*
Phone:*
XXX-XXX-XXXX format
Your Email Address:*
Second Contact (Parent/guardian, spouse)
First Name:
Last Name:
Relationship to member:
Address (Street or PO Box):
City*
State*
Zip Code*
Phone:*
XXX-XXX-XXXX format
Your Email Address:*
NEW FAMILY MEMBERS AND DATE(S) OF BIRTH:
SATISFACTION WITH YOUR RESEARCH EXPERIENCES AT UNC-CH or UW-M:
OTHER COMMENTS OR CHANGES:
UPDATED CONSENT
When you enrolled in the Fragile X Research Registry, the consent form said that research projects would be at either the University of North Carolina at Chapel Hill or the Waisman Center at the University of Wisconsin. The Registry is planning to expand to other research centers and universities that have IRB-approved studies on fragile X syndrome and fragile-X associated disorders. You may authorize us to contact you about research opportunities by these collaborating research centers and universities by amending your consent. All other aspects of how the Registry functions remain the same as that you agreed to in the first consent form.
Yes
, I would like to be contacted about research opportunities at other research centers and universities (in addition to UNC and UW) that have been approved as collaborators by the Fragile X Research Registry.
No
, I only want to be contacted about studies at University of North Carolina at Chapel Hill or the Waisman Center at the University of Wisconsin, as previously agreed upon.
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Email:*