The Cancer Experience Registry® collects three types of information:
Personal Information: To sign you up and authorize you to access the registered-only section of the Registry, the Registry collects some information that can be directly associated with you and any person for whom you are creating a profile. This is called "Personal Information," and it includes among other things, name, title and email address. You may modify your Personal Information at any time by selecting "Manage Account" in the log-in screen at the top of the page.
Information used for Research: Once you have become a participant in the Cancer Experience Registry®, it will send you an email asking you to log into your profile to answer questions about your experience with cancer - either as a patient or a caregiver.
This information will be used for research purposes to help identify the emotional, social and financial impacts of cancer. The aggregated findings from this initiative may be published in scientific journals or might be presented at professional meetings. Your name or any other identifying information that could be linked to you will not be used.
Standard Web server traffic pattern information: General traffic, site usage, and length-of-stay information is collected and stored in log files throughout both the public and the registered-only sections of the Registry. This type of information is not shared outside of the Cancer Experience Registry® community, and then only in summary so any personal information will remain anonymous and unidentifiable.
By registering as a participant in the Cancer Experience Registry®, you have granted permission to use your Personal Information to send you emails ("opt-in"). If you have received an email from the Cancer Experience Registry®, the records indicate that you are a registered participant or have asked to receive such information.
Because the Cancer Experience Registry® respects your time and attention, every effort is made to control the frequency of Registry emails. You may remove the permission you have given to use your Personal Information to send you emails ("opt-out") by following the opt-out links at the end of any emails sent to you.
Please note that being able to send updates and announcements about new surveys is part of being an active participant in the Registry. If you elect to unsubscribe to emails sent by the Cancer Experience Registry®, your personalized account to access the Cancer Experience Registry® will also be de-activated. If you believe you have received unwanted, unsolicited email from the Registry sent via the website or purporting to be sent via the Registry, please forward a copy of that email to firstname.lastname@example.org.
It is our policy not to make Personal Information available to anyone other than the CSC team involved in the Registry. We will never share, sell or rent Personal Information without your prior permission or unless ordered by a court of law. Personal Information will only be made available to staff managing this information for purposes of contacting you or sending you emails based on your request for information.
The Cancer Experience Registry® maintains a variety of physical, electronic and procedural safeguards to protect your Personal Information. As mentioned above, it is the Registry's policy to restrict access to Personal Information to the CSC team. The Cancer Experience Registry® website may have links to other, outside websites that cannot be controlled. You should know that the Cancer Experience Registry® has no control over the content, privacy policies and terms and conditions on such websites.
When the Cancer Experience Registry® sends emails to participants in the Registry, it may include a Web Beacon to allow the Registry to determine the number of users who open Registry emails. When you click on a link in an email that the Registry has sent to you, it may record this individual response to allow the Cancer Experience Registry® to customize offerings to you.
Web Beacons collect only limited information, such as a cookie identifier, time and date of a page being viewed, and a description of the page on which the Web Beacon resides (the URL). Web Beacons can be refused when delivered via email. If you do not wish to receive Web Beacons via email, you will need to disable HTML images or refuse HTML (select Text only) emails via your email software.