FAQ

The goal of the WU-PE-CGS study is to better understand three types of cancer that we don’t have much data on yet. These types of cancer are: cholangiocarcinoma (a rare bile duct cancer); colorectal cancer in Black Americans age 65 and under; and multiple myeloma in Black Americans.

To learn more about these cancers, the study asks people who participate to give permission to do genetic tests and to look at their medical records, as well as to answer questions in surveys and interviews.   

People who participate can choose to get their genetic testing results back and get genetic counseling about their results.  

This will help the study understand new information about genes that can cause cancer growth in these cancers and can improve cancer treatment and follow up care. It may also improve the way that genetic testing results are developed and given to cancer patients.  

These are the general steps most participants in the study would see: 

Step 1: Interest in the study. Study team members may contact you to ask if you’re interested in hearing more about the study. Or, you may have heard about the study on your own, and reached out to the study team to learn more.  

Step 2: Decide whether to take part in the study. Over the phone or in person, a team member will discuss the study with you and answer any questions you may have. If you feel you want to participate, the team member will review an informed consent form that describes all the details of the study so that you can make a choice about whether or not you want to take part. If you decide to take part in the study, you will sign the form. 

Step 3. Complete the baseline survey. If you want to take part in the study, the study team will ask you to complete the first survey , called the baseline survey. This asks questions about your background, your health history, and other topics. 

Step 4. Receive study newsletters. After joining the study, you will start receiving a twice-yearly newsletter that gives updates on the study.  

Step 5. Option to get genetic testing results and genetic counseling. If you told the study team that you would like to receive your genetic testing results, they will be delivered to you in the way you chose: in person, by phone, or through Zoom. A paper copy will also be sent to you and results will also be available on your personal study portal. You will also have the option to talk to a genetic counselor about your results.  

Step 6. Complete follow-up survey and interviews. After the baseline survey, the study team will ask you to complete a follow-up survey once a year for up to 4 years. If you choose to receive your genetic test results, you will also be asked to complete another survey around 6 to 8 weeks after you get your results.

There will be the option for some participants to take part in additional research related to the main study. Participants taking part in this research will be asked to complete additional surveys and interviews. 

The WU-PE-CGS study is funded through the Cancer Moonshot initiative, a White House initiative to accelerate the rate of progress in cancer research and treatment. It is also supported by the Foundation for Barnes-Jewish Hospital.

There are many reasons people may take part in the study. 

They may be interested in helping doctors better understand their type of cancer, or improving cancer treatments for those who have not had good cancer treatments in the past.  

They may also be interested in receiving genetic testing results and genetic counseling. For some participants, these results could be used in their treatment or future health care. Because some genetic changes run in families, the results of genetic testing may also benefit participants’ family members – if the participant chooses to get these types of results and then share them.  Some participants, though, may not get testing results and some results may be research results that cannot be used to make medical decisions.  

Finally, people might join the study because they  want to be involved in the way cancer research is done, and have a larger voice in the future of cancer research.

There is no cost to take part in the WU-PE-CGS study.

There’s been great progress in treating cancer over the last decades. But, unfortunately, not all groups and types of cancer have benefitted equally. Our study’s goal is to learn from – and work with – participants so we can help narrow health inequalities in groups with rare and understudied cancers. 

The study hopes to grow knowledge of genetics among groups that have not typically been equally represented in cancer genetic testing research. The study also actively partners with people from these groups to improve the components of the study, including how we deliver clear, useful  genetic testing results and genetic counseling. 

This approach works toward our goal of engaging populations that are underrepresented in genetics research and improving cancer care for underserved communities, which we hope reaches to other cancers beyond the three included as part of the current WU-PE-CGS study. 

Confidentiality: While the study will do its best to keep your health and related personal information secure, and we do not expect this to happen, there is a small risk that health information is accidentally disclosed. We take every step possible to protect against this risk by saving information in files and folders that only the study team can access, and identifying people by a number instead of their name on their data.   

Blood draws: If you are asked to provide a blood sample, there are routine risks linked to having blood drawn. This can include bleeding, bruising, or pain.  Some people become dizzy or feel faint, and there is also a rare risk of infection. For a small number of multiple myeloma patients, a bone marrow aspiration may be done for the study. Serious harms from this are rare but more common than from a routine blood draw.

Anxiety: Some participants may feel nervous or have similar emotions when answering questions or receiving requested results about their cancer or cancer risk.  

Participants are paid for completing certain parts of the study.   

It’s easy. Please email us at pecgs@wustl.edu or phone us at 314-273-2434.

For information about other research studies that are enrolling – as well as general information about taking part in research studies: click here.

Genetic testing can provide important information about cancer risk and possible treatments. However, compared to many other cancers, we know less about the genetics of the rare and understudied cancers included in the WU-PE-CGS study. This study hopes to narrow that gap through genetic testing of people with these cancers as well as working with study participants on the best approach to returning their results.

To be able to do the genetic testing that is part of this study, we need samples of participants’ cancer tissue or bone marrow as well as blood or saliva samples. The study works with participants’ oncology teams and health systems to get past samples.  

No. The study will only ask for part of your sample, ensuring that enough remains for any future healthcare needs.   

Participants can choose which types of genetic test results they’d like to get, including getting no results at all. 

If participants decide they want to get their test results, they can choose to receive any or all of these options:

Biomarker information from your cancer cells 

Biomarkers are gene changes specific to your cancer cells. Depending on where you are in your cancer treatment, these findings may help us learn which therapies might work better for your type of cancer and which therapies might not work as well. Biomarkers can also help determine options for joining a clinical trial. These types of gene changes are not inherited. This means they are not passed from a parent to a child. We will not share any information with your family unless you ask us to with a written request. 

Inherited mutation related to cancer 

Inherited mutations are gene changes that can be passed from a parent to a child. Some of these gene changes are known to increase the risk of some cancers. If an inherited mutation is found and confirmed, you could choose to share this information with your family members who may also have this mutation. In some cases, early or extra cancer screenings, or other ways to manage cancer risk, may be recommended for those family members. Inherited mutations could also impact your future treatment. 

Inherited mutation related to other medical issues 

Inherited mutations can also increase the risk of other medical conditions, like heart disease. 

We will only look for inherited mutations in the 73 genes that are recommended by the American College of Medical Genetics (ACMG) that can be found here.

If an inherited mutation is found and confirmed, you could choose to share this information with your family members who may also have this mutation. Family members with the mutation could get additional screenings or preventive care to reduce the chance of future health problems. Inherited mutations could also impact your current or future healthcare. 

For more detail on WU-PE-CGS genetic test results options, see the Return of Findings Information Sheet.

If we find a mutation that could run in the family, we will work with the study participant to have another blood or saliva sample tested in a clinical lab. Aside from that, we aren’t able to provide participants genetic testing beyond those included as part of the study. Participants’ oncology teams and the study’s genetic counselor could provide possible testing options outside of the study. 

If we find a mutation that could run in the family, we will work with the study participant to have another blood or saliva sample tested in a clinical lab. If the clinical lab confirms the mutation, family members will be able to have the same genetic test done in that lab at low or no cost to them.

Participant data and information may be shared with other approved groups. The data from this study, though, are stored using coded ID numbers. They do not include details such as names, addresses, or similar information that would directly identify participants. We will review who can access your data and under what conditions as part of the informed consent. 

The study is unable to enroll those who have passed away. If a participant has passed away after enrolling, the study may still arrange to get tissue samples. 

The study does not work directly with participants’ care teams, apart from gathering health records and tissue and bone marrow samples used in genetic testing. Participants, however, are free to share any results from the study with their personal clinical care teams.

Study participants play a key role in helping to develop and improve components of the study. This helps the WU-PE-CGS study meet the needs of its participants, as well as their families, loved ones, and healthcare teams. Participants interested in being part of the WU-PE-CGS Participant Engagement Advisory Board (PEAB), please email us at pecgs@wustl.edu or phone us at 314-273-2434.

We’re happy to answer any questions about the WU-PE-CGS study. Please email us at pecgs@wustl.edu or phone us at 314-273-2434.