You have questions? We have answers! The following is a list of frequently asked questions. We have listed the questions that we consider may be the most frequently asked. If you have other questions, or need more information, please contact us.
What is the purpose of The Prostate Cancer Registry?
The purpose of the Prostate Cancer Registry is to provide prostate cancer survivors a unified voice to advance understanding of the challenges that universally affect survivors. Through sharing their experiences, we envision prostate cancer survivors working as one to build knowledge about the challenges they have faced. Our hope is that, through new research, individuals affected by prostate cancer can become more informed and active in making decisions. We hope to play a part in forming a supportive community that may possibly lead to improved quality of life and enhanced possibilities in survivorship. Finally, we hope the findings from the Registry will provide support, empowering survivors as they transition from active treatment to post-treatment.
By joining The Prostate Cancer Registry, will I receive healthcare services?
No. Participation in The Prostate Cancer Registry does not offer direct access to any medical services or advice, nor does it endorse or provide any medical or healthcare product. If you have any questions about your healthcare, please talk to your doctor.
Who can join The Prostate Cancer Registry?
The Registry is open to any male 18 years and older who has been diagnosed with prostate cancer at any time in the past—whether recently diagnosed, undergoing treatment, or years (even decades) past treatment.
Is there a cost for joining The Prostate Cancer Registry? Or payment for joining?
There is no cost to join. You will not be paid to join or participate. The Prostate Cancer Registry is relying on volunteers to participate in this project.
What do I have to do to join?
Joining The Prostate Cancer Registry is easy and takes less than an hour. That said, you don’t have to complete the process in one sitting. You can save your responses and come back later—when it is convenient for you—to pick up where you left off. You will also be required to agree to a consent form to participate.
Why do I have to agree to a consent form?
This is a research study, and the Clark Atlanta University (CAU) Institution Review Board (also known as an IRB or Ethics board) approves and regulates all research studies at CAU. The consent form outlines the study in detail and lets you know your role and what your rights are as a participant in the study.
Will my information be kept confidential?
Only certified members of the research team will be able to link your contact information to your survey responses. This information will be kept secure and confidential and will never be sold to a third party. When results of the research are published or discussed, no identifiable information will be used.
You will create your own unique username and password to keep your account private. After you enter your information it will be protected. You will have the ability to view only your own contact information.
What if my contact information has changed or I no longer want to be part of the Registry?
You may change your contact information. To change your contact information log in to the Prostate Cancer Registry and go to your profile page to enter your updated contact information.
Your participation is completely voluntary and you have the right to withdraw at any time. To withdraw from the registry, log in to the Prostate Cancer Registry, go to your profile page, and choose “Withdrawal Consent” you can also contact us to request withdrawal. If you agree to participate now and change your mind later, some of your information may be used in the research, but no information will be used moving forward from the time you withdraw from the Prostate Cancer Registry.
I’m trying to fill out the questionnaires but I don’t see the answer option that perfectly represents me. What do I do?
We understand that you might not see an answer choice that exactly matches your situation. Please do your best to select an answer option that best describes your situation. It may be helpful to know that the questions and possible answers come from standard, validated scientific assessments, which is why we choose not to alter the question and/or answer options.
What if I have additional questions or concerns?
If you have questions or concerns about your taking part in the Prostate Cancer Registry, please contact us.