Frequently Asked Questions



Participant Portal

What is the CPS-3 participant portal?

The CPS-3 participant portal is a secure web-based portal where participants can easily engage with our study team. The portal can be used to access surveys, update personal and contact information, report new cancer diagnoses, and receive up to date information about CPS-3 research. The portal is still a work-in-progress and we hope to increase functionality in the future in order to collect new types of data, engage participants in shorter, but more frequent surveys, enroll participants in smaller sub-studies, and provide participants with a greater feeling of connection to CPS-3.

Who can sign-up for the participant portal?

All CPS-3 participants will be invited to join the portal over the next two years. Invitations are currently only being sent via email.

How are the surveys I receive in the portal different form the survey I receive every 3 years? Will I still get the longer surveys?

The CPS-3 participant portal will be used to send shorter, more frequent surveys so we can gather information on exposures and behaviors that change quickly over time and make it easier for you, as a participant, to share updates with us. We anticipate that the surveys you access through the portal will be much faster for you to complete and will help our researchers gather different types of information that may not be possible on a longer, less frequent survey. You will continue to receive your follow-up surveys every three years. It is still essential that you complete each survey that you receive from us to ensure that we have high quality, complete data to use in analyses. In the future, the triennial surveys will be accessible via the CPS-3 portal account as well, which will eliminate the need to keep up with two CPS-3 accounts.

Do I need to complete my 2021 follow-up survey to join the participant portal?

No. While it is essential that all participants complete their 2021 follow-up survey on paper or online, it is not required to join the portal. The online follow-up survey is currently offered on a different platform and cannot be completed through your portal account.

Do I have to register for the CPS-3 participant portal?

Registration for the portal is optional. If you do not join, you will continue to receive CPS-3 communications, newsletters, and the triennial survey via email or mail as you have before. However, you may not be able to participate in voluntary sub-studies. These include the upcoming Gut & Oral Microbiome Sub-Study, as well as future sub-studies on topics such as cancer treatments, survivorship, or caregiving.

How can I change or update my contact information?

Your name, email address, mailing address and phone number can be viewed and changed in “My Account.” To access “My Account” click on the person icon in the top right corner and select “My Account” in the drop-down menu. Your name and email address can be viewed and changed in “Account Details.” To view or change your mailing address on phone number, click on "Contact Information." We will automatically receive any updates you make.

How can I change my password?

Your password can be changed in “My Account.” To access “My Account” click on the person icon in the top right corner and select “My Account” in the drop-down menu. To change your password, click "Change Password", enter your old password, then enter your new password two times. You will receive an email notification that your password has been changed. If you forgot your password, you can click on the "Forgot Password?" link on the login screen. You will be prompted to enter your email address. Enter the email address you used to register for the portal. You will shortly receive an email with a link to reset your password. This link will expire after 24 hours. If you have any questions, please contact us.

I share an email with someone else. Can we both use it to register?

No. An email address can only be used by one person. If you try to use an email address that has been used by someone else to register, you will receive a message saying the email address has already been used and you will not be able to continue with your registration with that email address. You will need to use a different email address if you would like to register for the online participant portal.

What does it mean if I unsubscribe from the portal emails? Can I change my mind later and resume getting emails?

If you click unsubscribe in one of the CPS-3 Participant Portal emails, you will no longer receive emails relating to the portal. You will still be enrolled in the study, and you will continue to receive other correspondences from us. If you change your mind and want to resume getting emails about the CPS-3 Participant Portal, please email us at cps3@cancer.org or call us at 888.604.5888 so we can change your status.

Why was I automatically logged out of my account?

After 80 minutes of inactivity, you will be automatically logged out. Use your email address and password to log in again. You may have to refresh the page to return to the login page.

Who is QuestionPro?

QuestionPro is a vendor we have partnered with to develop and host the CPS-3 participant portal. They provide us with the technical expertise needed to ensure we create a successful, useful, and secure experience for both our participants as well as our research team. They do not have access to any participant data.

Is my data private and secure?

Yes. Since the launch of CPS-3, data privacy and security has been one of our top priorities. Our vendor, QuestionPro, utilizes cutting edge security practices by hosting the portal on secure sites, utilizing HIPAA compliant servers to store all data, and is compliant with the strictest industry security standards. Access to the data that you share through the participant portal is limited to a small group of American Cancer Society CPS-3 researchers who go through regular biomedical research ethics training and have signed confidentiality forms. Your personal identifying information (name, date of birth, address) are kept separate from any health or survey data in order to protect your privacy. In addition, we have robust internal practices to ensure your data remains safe and private. See Data Security and Privacy section for more details.

General

Can I still sign up to be part of CPS-3?

Recruitment for CPS-3 was completed in 2013 and no new participants can enroll.

Who is running the study?

CPS-3 is funded by the American Cancer Society and managed by the Society’s Population Science department. The Population Science department conducts, analyzes, and publishes original research on the causes and prevention of cancer. We also conduct research focused on addressing the needs of the growing number of cancer survivors, and behaviors linked to cancer risk and survivorship, and medically vulnerable populations.

How long will the study last?

CPS-3 participants will be followed for at least 20 years, and we will continue to contact participants approximately every three years with mailed surveys for participants to complete. The CPS-3 participant portal will be active for the duration of the study. An important part of maintaining the scientific validity of large-scale studies like CPS-3 is being able to follow individuals over time to update relevant lifestyle, behavioral and medical information.

Who is in the study?

More than 300,000 men and women of various racial/ethnic groups from all over the United States and Puerto Rico are enrolled in CPS-3.

Technical

Who makes sure this study is scientifically sound?

There is ongoing peer review of CPS-3 by cancer researchers from many prominent university and research institutions.

Who makes sure this study is safe?

Review and oversight by the Emory University IRB (Institutional Review Board) continues throughout the study as investigators analyze survey and biological data.

What is an Institutional Review Board?

An Institutional Review Board (IRB) is a research oversight committee charged with assuring, both in advance and by annual review, that appropriate steps are taken to protect the rights and welfare of humans participating as subjects in approved research studies based on the ethical principles of the Belmont Report.

What is the Belmont Report?

In 1974 Congress passed the National Research Act which created the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Commission wrote the Ethical Principles and Guidelines for the Protection of Human Subjects of Research (commonly referred to as the Belmont Report). The Belmont Report contains the ethical principles upon which the federal regulations for protection of human subjects are based.

For CPS-3 Participants

When will I receive my next survey?

CPS-3 follow-up surveys are administered every three years. The most recent follow-up survey was sent out to all participants in March 2021. Participants who join the CPS-3 participant portal will additionally have the option of completing brief, 5-10 minute surveys approximately every three months.

How do I complete my follow-up surveys?

Registered portal users will receive an email anytime a new survey is available along with instructions on how to access your survey through your portal account. The triennial follow-up survey will be available via the CPS-3 portal account, which will eliminate the need to keep up the two CPS-3 accounts. Participants who are not registered on the portal and who have a valid email address on file will receive an email with instructions to directly access your triennial follow-up survey through a different account platform. Participants without a valid email address will receive paper surveys mailed to your home address with a pre-paid return envelope. We will continue to send you requests via email or mail to complete your follow-up survey until you complete it or we end the survey collection period.

How long do I have to complete my survey?

In order to save donor dollars, we request that all participants complete their surveys as soon as possible after receiving them. We understand that life is busy, so we will continue to send you request to complete your survey until the end of the survey collection period. Active survey collection for portal surveys will typically be about 2 months. For triennial follow-up surveys, the active survey collection will last about 2 years.

How will I get updates on the study?

As a participant, you will receive an annual mailed newsletter along with emailed e-newsletters containing study highlights and updates. You may also visit cancer.org/cps3 anytime to access newsletters and get more information about the Cancer Prevention Studies.

Can I still be in the study if I develop cancer?

Yes. In addition to studying the causes of cancer, we also want to learn if environmental, lifestyle, and genetic factors influence treatment outcomes, survival, and quality of life following a cancer diagnosis. And depending on the type of cancer, we may even ask you for some additional information about your cancer to better understand factors that affect cancer survivors. So, it is important for us to follow all participants for the full length of the study.

If you are registered for the CPS-3 participant portal and develop cancer, we ask that you report your recent cancer diagnosis by clicking on the "Report a Cancer Diagnosis" tab and following the instructions. Depending on the cancer type, you may be asked to take additional cancer-specific surveys, consent to allow us to collect tumor tissue, or partake in cancer-specific sub-studies. By reporting your cancer via the portal, you will save the ACS time and money and enable more relevant and timely research on cancer survivorship and treatments.

How will you use my information?

The study began by collecting information about lifestyle, behaviors, environment, and medical history from individuals who do not have cancer. As we follow CPS-3 participants over time, we update these pieces of information and ask about new disease diagnoses. The information collected helps us understand the differences (in lifestyle, environment, and genetic factors) between people who get cancer and people who do not get cancer. Ultimately, this information will further help us identify cancer risk factors and how to best prevent disease in the future.

Will I ever have to provide medical records?

If you are diagnosed with cancer while you are still participating in CPS-3, we may ask you for written permission to get your medical record so that we can obtain more information about your diagnosis and treatment. We may also ask your permission to contact the hospital where you were treated for a sample of the tissue taken to diagnose or treat your cancer, such as a biopsy. At that time, you can agree to give us permission or not. The best source for accurate information on cancer features is in the medical record or from the tissue collected.

Why would I want to continue to participate in this research study?

Most people who participate in research studies hope they will contribute to a better understanding of how to prevent disease. For CPS-3, this knowledge will help reduce the number of people diagnosed and dying from cancer in the future.

Data Security and Privacy

Will my online information be kept secure and confidential?

Yes. Our surveys are hosted on secure sites. All information is kept secure and confidential with limited access to study staff who go through regular biomedical research ethics training and have signed confidentiality forms.

Will my data be kept confidential? How will this be done?

Yes. Every effort is made to protect the identity of the participants in this study. All study staff sign confidentiality forms and undergo training in research ethics. When your data are collected, they are labeled with a unique identification number. Your data are then stored separately from all personal identifiers, such as your name, address, email, and phone number. All study materials are stored in a locked facility and secured computer files, and your personal contact information is kept in separate files accessible only to a limited number of CPS staff. This personal contact information will not be shared with anyone, including other staff at the American Cancer Society, unless they are directly involved in managing CPS-3.

For Researchers

How can I use CPS-3 data?

American Cancer Society's Population Science investigators recognize the value of and welcome externally proposed studies. Therefore, investigators not employed by our program may request access to CPS data and/or biospecimens to conduct a study. For further information, please review our Data Access Policies and Procedures.

More Information

How can I learn more about CPS-3?

Please visit our website at cancer.org/cps3 , email us at cps3@cancer.org, or call our toll free number at 888.604.5888 (Available Monday-Friday 9:00 AM – 5:00 PM EST). You can also join our Facebook page for additional updates.

Where can I find out more about risk factors, diagnosis, and treatment for cancer?

For cancer information and resources 24 hours a day, seven days a week, call 1-800-ACS-2345 or visit our website at cancer.org . Spanish services are available.

What scientific insights have my data contributed to?

CPS-3 data are being used for a variety of scientific research questions including: how diet influences cancer risk (by examining dietary patterns at different times of life, meal timing, binge drinking, and blood biomarkers of diet); the role of activity and sleep on cancer (by examining different intensities of physical activity, patterns of sedentary behavior, and sleep, including light at night); determinants of tobacco use and cessation (including the influences of genetics, e-cigarettes, and marijuana); associations of viral and bacterial infections with risk of cancer; collecting tumor tissue to study specific molecular subtypes of colorectal, prostate, blood, ovarian, and breast cancers; and deepening our understanding of the unique health effects of cancer among cancer survivors.

What type of study is CPS-3?

CPS-3 is a longitudinal, prospective cohort study, which means we follow the same group of participants over many years in order to observe key factors associated with cancer risk. We send our participants multiple surveys over the years to update health information, ask about new exposures and outcomes, and track changes over time.

Why is it important to return each survey I receive?

By returning each survey you receive, we know we are using the most accurate and up-to-date information in our scientific analyses, and we can observe how changes over time affect health outcomes. The important difference between our studies and studies that only include a single survey is time: by collecting important health, lifestyle, and environmental information over time we can see how changes in exposures are related to cancer risk and other health outcomes. Participants who register for the portal and complete the additional shorter surveys will be helping us obtain even more up-to-date information.

What if my health changes outside the active survey period?

If you have been diagnosed with a cancer, you can email our study team at cps3@cancer.org or call us at 888.604.5888 and let us know the type of cancer and your diagnosis date. If you are a member of our participant portal pilot study, you can login to your account to report your cancer diagnosis. Any other health changes or updates can be reported on the 2021 follow-up survey.