The Withdrawal Procedure

Withdrawal of consent may be requested by the participant in-person, in writing, or via telephone, or email.

If withdrawing from study, please include your name, date of birth, and date of withdrawal request.

A participant who withdraws consent to the Health Registry is a patient who: "Requests no further contact AND no further use of data and biospecimens".

Note: Participants cannot partially withdraw from the Health Registry because the informed consent is not a tiered ‘opt-in/out’ process. In other words, participants who consent to the Health Registry, consent to collection and broad use of data and biospecimens along with future contact. Withdraw of informed consent implies a withdrawal of the broad use of data and specimens as well as no future contact. This requires that all participant data be removed from analytic files and all specimens destroyed.

As stated in the UNC Health Registry Informed Consent, “Any analysis in progress at the time of your request or already performed prior to your request being received by the researcher will continue to be used as part of this research.”

A patient that wishes only to have no further contact from the Health Registry is not considered a withdrawal, they will be considered to have “Declined All Follow Up”. This will ensure they are not contacted by the UNC Health Registry in the future, but still allows for the use of data and specimens collected before the request for no further contact was made. An example of when this situation may occur would be for patients who are too ill to complete annual follow-up interviews but who wish to remain in the registry and allow their data and specimens to be utilized.

UNC Health Registry
Email: unchealthregistry@med.unc.edu
Phone: (toll free) 877-783-2358