A: A registry is a place where patient data, which can include things like medical records or patient specimens, is stored. Usually this collected information is made available for research.

A: The Uterine Cancer Registry is the first uterine cancer registry that will make it possible for all uterine or endometrial cancer patients and survivors, possibly you, to provide data that will be used in ovarian cancer research.

A: The population for the Registry will include women who have a history of invasive uterine or endometrial cancer.  This includes patients who are still undergoing treatment and survivors. Patients and survivors are eligible to become “Members of the Registry.”

A: There are no costs associated with joining the Registry.

A: To learn how the Registry works, please visit: How it Works

A: Many advances in medicine are a result of key research findings. Specifically, research performed using data and specimens from patients with the disease or condition of interest (in this case uterine or endometrial cancer) is the most likely to produce clinically meaningful results.

A: We value your participation and respect your right for privacy. We take measures to ensure that your privacy is protected at every stage. We securely store your information at the Gynecologic Cancer Center of Excellence (GYN-COE), and data and specimens distributed for research are labeled with codes, and do not have your name or any private information associated with them. You can cancel participation at any time, and request that your data be discarded. Your data will never be sold. Your data will never be shared with researchers without approval from an Institutional Review Board as well as the Registry.

A: While it is likely you will not receive direct benefit from the Registry, you will be contributing to a legacy that will help generations of women.

If you participate in the Registry or in the Friends of the Registry, you will enjoy all the benefits that being a member of a like-minded community can bring.

A: You will be asked to watch a video about the Registry, to read a Consent Document regarding the Registry, sign an informed consent form, and create a member account. If you want, you can invite a friend or family member to help you join the Registry. After you complete the consent and registration process, you are an official member of the Registry. Your membership will remain intact indefinitely. You have the option to withdraw from the Registry at any time.

A: You will create a Member Account, receive a unique Member ID, and submit personal profile information to operate the Registry and submit research data to support approved research projects. Research data will be collected from research forms, including a GYN research questionnaire, an uterine cancer history form, an annual uterine cancer form, and from copies of medical reports from your cancer surgeries and procedures. We will ask you to sign a medical release form to obtain copies of your operative, pathology, and cytology reports from the hospital where you had your cancer surgery. You have complete freedom to decide what you do and do not wish to submit to the Registry. All of the forms are completely voluntary. We will walk you through every step of the process. All of these forms can be completed online. If you want, you can invite a friend or family member to help you complete any of the Registry forms. That is completely up to you.

A: The Informed Consent Form is a mandatory document that covers what participants can expect from the study, what the study is and is not, procedures you can expect, security measures we take to protect your privacy, and more. It must be signed for you to be granted membership in the Registry.  A copy of the signed consent form will be made available to you for your records should you decide to proceed.  You may change your consent answers at any time on the Registry website.

A: You will be asked to contribute wellness information about your lifestyle and your experience with cancer initially upon joining the Registry, and annually thereafter for research purposes. Completing the Member forms are voluntary, but these forms help us make connections about how lifestyle and other factors might impact survival rates, improve quality of life, and more.

A: If you would like to authorize a member of your family or a friend to inform the Registry of changes in your medical health, you may fill out a medical authorization form. If you do not wish to authorize anyone to share your medical information with the Registry, you do not need to fill out this form. Many find it easier to enable a friend or family member to communicate on their behalf. To facilitate this process, this form is accompanied by a Medical Update Form, which you can provide to whomever you have authorized to inform the Registry on your behalf. It must be signed by you.

A: The Medical Release Form authorizes your hospital or facility where you had surgery, or a procedure, to submit copies of your records to the Registry. This form is optional. If you choose to share your medical reports (operative note, cytology report, and pathology report), you will need to sign the Medical Report Release Form. These documents are typically transferred free of charge, but if your physician or hospital requests payment for transfer of this information to the Registry, this expense is typically small. In order to make this process logistically less complicated for the Registry, we would ask you to bear this expense as your contribution to the Registry. If you are unable to make this investment, it does not mean you can’t remain a participant in the Registry providing the other sources of information for research.

 

Additionally, the Registry may be able to secure funding in the future from donations or grants, for example, to pay fees associated with transferring your medical reports.  If you are unable or unwilling to make the investment of paying potential fees, then please send an email with the details including the amount of the fee and to whom the fee needs to be paid to ucr@endgyncancer.com.  The Registry will deal directly with the hospital or your doctor to get copies of your medical reports once funding is secured to pay the fee.

A: No. Reports about research done with your data will not be given to you or your physician. Results will not be placed with your health records.

A: No. Sharing your personal story with other members is optional. If you would only like to contribute data, that’s fine.

A: If you have questions about the Registry please send an email to ucr@endgyncancer.com and a member of our team will reply to you as soon as possible.

A: Participation in the Registry is voluntary and you can opt out at any time. To withdraw, log into your account, and select the “Withdraw from the Registry” link, and fill out the electronic form on that page.  You will be able to decide how you would like the Registry to handle your member profile and any coded data that has already been submitted to the Registry.  Your member profile and all associated coded data can be permanently removed from the Registry and not used for any future research if you so choose.  If you would like the Registry to keep your coded data for future research you may do so.  The Registry will respect the wishes of any member wishing to withdraw from participation.  The decision to withdraw from the Registry is available to you at any time and will not affect your care in any way.  Please be aware that the Registry cannot retract any coded data sent out to support research prior to your withdraw.

A: The Uterine Cancer Registry is funded by the Gynecologic Cancer Center of Excellence (GYN-COE) and the Inova Research Foundation.