CREATE A POCP USERNAME
If you are interested in participating in the Prevent Ovarian Cancer Program (POCP), you can start the process by clicking on "Create a new account" under the Login/Sign up tab and follow instructions to create a unique username. You will use this username for online activities for POCP; in order to ensure that your answers remain private and confidential please do not use your full name.
TRACKING YOUR PROGRESS
Once you have a Prevent Ovarian Cancer Program username, a "My Journey" link will appear in the top right corner of this website. Please go to this page to learn about next steps. We will use a combination of this page and email to keep you up to date on your progress throughout the program.
CONFIRM YOUR ELIGIBILITY
After you create a username, you will be provided with instructions in the "My Journey" link on how to complete a quick survey to confirm whether or not you are eligible for the POCP. This will include answering questions about your family history of cancer, previous genetic testing and information required for us to obtain your family member's pathology report. The information on this report will help us identify the type of ovarian cancer that your relative was diagnosed with. To qualify for this program, your relative must have had a type of ovarian cancer called high-grade serous ovarian carcinoma (HGSC), as this is the type most often associated with BRCA1 or BRCA2 gene mutations.
GENETIC COUNSELLING & TESTING
- Completion of a family history questionnaire: First, you will be asked to complete a short online questionnaire about the history of cancer in your family. All of this information will be sent to the POCP genetic counsellor so that we will have a better understanding of your hereditary risk for ovarian cancer.
- Completion of a pre-genetic testing counselling session: You will have the opportunity to speak to a certified genetic counsellor about taking a genetic test, and your risk for ovarian cancer. This may occur in person or through a phone call after viewing an online presentation.
- Genetic test: You will be asked to provide a blood sample. This may be arranged at a local LifeLabs facility (click for a list of locations that are currently accepting POCP blood samples). The blood sample will be sent directly to the Princess Margaret Cancer Centre so that we can perform the genetic test and confirm the presence or absence of a genetic mutation. You will be able to choose what type of genetic information you would like to receive.
- Completion of a post-genetic testing counselling session: The genetic counsellor will speak to you to provide any necessary counselling or clinical recommendations. During this time, the genetic counsellor will explain your genetic testing results and discuss options for reducing your risk for ovarian (and other) cancers, if necessary.
In the context of our program, the word ‘psychosocial’ simply means the interaction of ones thoughts and feelings (or psychology) with the social environment around them. The POCP psychosocial questionnaires will help us understand your thoughts, feelings, attitudes and knowledge about genetic testing and how they change throughout the program. The answers we receive will help scientists and genetic counsellors better understand how to improve genetic testing and counselling for women like you, in the future. You will be asked to complete psychosocial questionnaires at five different time-points (see Program Checklist).
You can participate in the POCP from home. This means you will not have to come to the Princess Margaret Cancer Centre in Toronto to be part of this program. If you need additional support or information during the program, we will connect you to resources in your community.
All of the steps are summarized in the diagram below. If you have any questions, please Contact us!
*Please note that all time points are estimates and may change based on participant volume
1. Once you have decided you are interested in participating in the POCP, create an account. Email us your username once you have created it.
2. We will email you an Eligibility Questionnaire to complete online. After we review this you will receive an email to confirm whether or not you are eligible to participate.
- 1-2 weeks
3. You will receive a consent package in the mail. Mail us your signed consent form and Contact Information Form in the prepaid envelope. Be sure to include your unique POCP username on the contact information form.
- 1-2 weeks
4. The POCP Team will call you to confirm the receipt of the signed consent and contact information forms. You will then receive an email with instructions on how to complete Psychosocial Questionnaire #1 and your Family History Questionnaire online.
- 2-3 weeks
5. After we have received your Psychosocial Questionnaire #1 and Family History Questionnaire, we will mail you a genetic consent package that includes an appointment letter (date and time of your first genetic counselling session), two copies of a genetic consent form, and a blood requisition form.
- 4 months
6. After your appointment, take the blood requisition form and a signed copy of your genetic consent form to a local LifeLabs facility to provide your blood sample. Your blood will be sent directly to The Princess Margaret.
- 1 week
7. You will receive an email with a link and instructions on how to complete a Psychosocial Questionnaire #2 online.
- 3-4 months
8. Once the POCP team receives your blood sample, they will perform the panel based genetic test. This panel based test will take approximately 3-4 months to complete. When the results are ready a genetic counsellor will call you to disclose your genetic test results and to provide you with referrals for additional clinical care, if appropriate.
- 1 week
9. You will receive an email with a link and instructions on how to complete Psychosocial Questionnaire #3 online.
- 3 months
10. You will receive an email with a link and instructions on how to complete Psychosocial Questionnaire #4 online.
- 1 year
11. Research coordinator will call you to follow up on any changes (if any) to your contact information or medical care. At this time you will also receive an email with a link and instructions on how to complete Psychosocial Questionnaire #5 online.