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HOW DO I JOIN? Joining the Registry is as easy as filling in the three-page questionnaire. All human research of any form in America is governed by the Department of Health and Human Services which assures that individuals understand both the risks and benefits of any research endeavor. These issues are discussed in the current Registry Questionnaire by a one-page consent form that should be signed and dated.
The options for enrollment are as follows:
2.
Download a text version of
the Registry Questionnaire 3. Download the PDF format of the Registry Questionnaire. This version can be opened by a program that is downloadable free from the web called Acrobat Reader. The acrobat download can be obtained at www.adobe.com. 4. To obtain a Registry application through the mail please call the Registry site toll free at 1-877-886-2383. After downloading and completing the application, please mail or fax the application to the Registry Data Coordinator Center at MUSC. Members can update their record at anytime by submitting an updated application on-line or through mail or fax.
You can also change your record over the phone or through email by identifying at least one unique data field in your record such as a birth date and updated information. Please remember us when you move, since we loose a few Registry members with every mailing because of address changes.
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