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Your Breast Cancer Risk Assessment: Understanding the PERSPECTIVE Study

This overview explains what will happen if you take part in the Personalized Breast Cancer Risk Assessment Study (also known as the PERSPECTIVE Study). If you follow up with us and are eligible to participate, we will send you more details.

You can find more about who is eligible in the Call for Participants.

Consent

If you are eligible to participate and decide to join the study, we will send you an information sheet to read and a consent form to fill out and return to us.

The 3 questionnaires

Once you have joined the study, you will be asked to fill out the Risk Assessment and Screening Questionnaire, online or on paper. It will take about 30 to 45 minutes to complete. The questionnaire asks about your:

  • general background
  • family history of cancer
  • screening practices
  • lifestyle habits

You will complete the second questionnaire after about 3 to 5 months and the third one after 1 year. These each take about 15 to 30 minutes to complete. These follow-up questionnaires update the information from the original one, and collect more information to help us understand the impact of knowing your estimated breast cancer risk level, and your choices for breast cancer screening.

Saliva sample

We will send you a kit to collect and mail in a saliva sample to provide a source of DNA for the breast cancer genetic test. Saliva collection usually takes less than 10 minutes. The kit will include everything you need to do this. Please note the study genetic test does not check for rare genetic mutations affecting specific genes (such as BRCA genes) that run in certain families and can significantly increase risk.

Mammogram report

We will need your permission to request the report from your last mammogram directly from the mammography centre. We use the breast density information from the report as part of your risk assessment. Having dense breasts increases your risk of breast cancer. A breast is considered “dense” when it has a lot of glandular tissue compared to fatty tissue.

Linking your information

We also will need your permission to link all the information collected about you in the study to existing provincial health data about the health services you use, such as doctor or screening visits. This is used for additional analyses and to monitor future changes to your health.

What we do with the information

The information from the entry questionnaire, your saliva sample and mammogram report help the researchers estimate your risk level (chance of developing breast cancer).

If you want to know your risk level, we will mail it to you about 3 to 5 months after you send in your saliva sample. Then we will ask you to complete the follow-up questionnaires.

You will be able to discuss your risk level with the research team if you want to, and get a personalized action plan for breast cancer screening. You will also get information to help you understand your risk level and how you may be able to reduce your risk of getting breast cancer.

If you don’t want to know your risk level, the researchers will not contact you again. However, the data already collected will stay in the study.

Your privacy is important to us

We will never disclose your name or other information that identifies you. Instead, you will be assigned a unique study number. Only select authorized study staff will have access to the original identifiable data.

If you decide to sign up for the study, you will need to understand more about how we keep your information secure, who will have access to it and how it may be used. A detailed explanation is included in the information sheet and consent form, which we will send you once we confirm you are eligible to participate.

Participation in the PERSPECTIVE study is completely voluntary. If you sign up, you can choose to leave the study at any time.