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FRAGILE X RESEARCH REGISTRY MEMBER UPDATE FORM

fill out this form and click SUBMIT at the bottom of the page.


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:

Please include area code
Home Phone: ( )  -

Cell Phone: ( )  -

Work Phone ( )  -

Your Email Address:

 

Second Contact (Parent/guardian, spouse)


First Name:

Last Name:

Relationship to member:

(click here if address information is the same as First Parent/Guardian)

Address (Street or PO Box):

City:     State:     Zip:

Please include area code
Home Phone: ( )  -

Cell Phone: ( )  -

Work Phone ( )  -

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.


 

Submit



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