CRN Patient Volunteer Listing

The Cystinosis Research Network is compiling a listing of individuals who are interested in participating in cystinosis research studies. If you are interested in having your name added to this list, you will be asked for some basic contact information and you will give CRN permission to release this information directly to researchers who are looking for individuals with cystinosis and/or their family members to participate in research studies. The researchers may then contact you directly in the future with various research opportunities.

Submitting this information in no way indicates your commitment to participate in any clinical trial. Rather, it simply gives your permission for researchers to contact you directly.

Patient’s Name*
Date of Birth*
Parents’ Names*
Address Line 1*
Address Line 2
Phone
Email*
	Please confirm letters above

This information can be mailed or emailed to:

Elva Smith
Vice President, Research
417 Clairemont Avenue, Unit 209+
Decatur, GA 30030
esmith@cystinosis.org

By forwarding this information, you give CRN permission to release it to researchers and their staff. You may have your name removed from this list at any time by contacting Elva Smith at the above address.

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