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Registry for U

At any UHealth location across South Florida, patients who come in for care are asked if they want to join a research registry that enables future research by University of Miami investigators. By saying yes, patients agree that their de-identified health information and leftover biological specimens be stored, used, and shared for future research. De-identified means there is no way a researcher or their study teams can know the information comes from you.

If you have more questions, you can reach out by emailing contactforresearch@miami.edu or call 305-243-8888 to speak to someone on the phone.

Frequently Asked Questions

Is participating in this registry voluntary?

Yes. Your decision will not affect your medical care or any of your benefits.

What materials will be collected as part of this registry?

“Materials” can refer to either de-identified health information from your electronic medical record (EMR) and/or any de-identified natural biological sample(s) from the human body taken during your clinical care at the University of Miami.

What does “de-identified” materials mean?

Your personal information (e.g., name, birth date, and other information that could directly identify you from your healthcare information) will be removed. This means that there is no way a researcher can know the materials came from you.

What happens to the information collected for this research registry?

The information collected may be used for medical, scientific, and other research.

What happens if I say “yes” to participating in this registry?

The University of Miami may store and/or use your de-identified materials for the purpose of medical, scientific, and other research, now and in the future.

Does my participation in this registry expire?

Your consent to participate in the registry will not have an expiration date.

Will agreeing to participate in this registry require additional medical procedures?

No extra procedures or time is needed from you to be in this research registry.

Does joining this registry cost me anything?

No, there are no costs associated with joining this research registry.

By joining this registry, will my information be shared with my health insurance company or others outside of UHealth?

No, your personal information will never be shared with an insurance company or others outside of UHealth and is required to be kept confidential.

What if I change my mind and no longer want to participate in this registry?

You may change your mind at any time and for any reason. Your de-identified materials may continue to be used in research studies that started before you changed your mind.

What type of future research may be done with my materials?

The type of future research studies will depend on the de-identified materials and the types of studies researchers want to conduct. Some examples of future research may be exploring how the body responds to a medication or treatment, identifying connections between measurable changes in the body and certain diseases, early detection for diseases, or de-identified genetic/genomic testing.

Will I know which research studies have used my material?

No, because all materials will be de-identified. There is no way a researcher can know the materials came from you.

Where can I find the Informed Consent Form (ICF) for this research registry?

A copy of the full ICF will be available in your MyUHealthChart account.

Who can I contact if I have additional questions or want to join this research registry?

You may email contactforresearch@miami.edu or call 305-243-8888 for further information/assistance and you may join this research registry through your MyUHealthChart account.