1. What is ONLOOP?

ONLOOP is a screening reminder program developed with the support of the Pediatric Oncology Group of Ontario (POGO). This program helps you check for late effects by sending you personalized health information and reminders for screening tests.

2. What are late effects?

Your cancer treatment is over, but the treatment that saved your life may cause long-term side effects. These are known as late effects. Even though you may feel well now, you may be at risk of late effects later in life. We recommend that all survivors get regular testing. This way, if late effects occur, they are found and treated as early as possible.

3. What are screening tests?

Screening means checking your body for cancer or other health problems before symptoms appear. These tests include mammograms, colonoscopies, and echocardiograms. Doing screening tests regularly can help find these possible health problems earlier, when treatment is likely to work best.

4. Why is this study being done?

The treatments used to cure cancer may cause long-term side effects called “late effects”. These late effects can cause serious health problems later in life. Screening tests can help find and treat late effects earlier. However, most adult survivors of childhood cancer do not regularly get these tests done.

ONLOOP was designed to give you health information that you can use. You can take your personalized health toolkit to your family doctor or nurse practitioner. They can help you order the screening test(s) that you need to stay healthy.

5. What happens if I sign up for this study?

If you sign up for this study, we will ask you for:

1) your contact information to send you a personalized health toolkit and a screening test reminder

2) how you would like to get health information and reminders

Optional: If you sign up for ONLOOP, you have the option to give us your family doctor's or nurse practitioner's contact information. If you give us permission, we will send them a letter with details about your cancer diagnosis and treatment. The letter will also remind them to talk to you about your health and the screening test(s) you need.

6. When will this study end? What happens after the study ends?

We hope to finish this study by March 2027. If we find that ONLOOP works well and helps you get the screening tests you need, we will work with health system partners and try to make this program permanently available for all survivors of childhood cancer.

7. Who are the researchers leading this study?

The ONLOOP program was developed by Dr. Paul Nathan (Pediatric Oncologist and Director of the AfterCare Clinic at The Hospital for Sick Children) and Dr. Noah Ivers (Family Physician and Scientist at Women’s College Hospital). They are now leading a research study to see if ONLOOP can keep you healthy by giving you health information you need, when you need it.

8. How does ONLOOP have access to my health information?

You received an invitation to ONLOOP from Ontario Health. Ontario Health is allowed to collect personal health information, and this information can be used in certain research studies. Ontario Health is supporting this research study by mailing out invitations to eligible individuals.

The Pediatric Oncology Group of Ontario (POGO) has a database called POGONIS. POGONIS contains information about people who have been diagnosed with a childhood cancer since 1985. This information includes cancer diagnosis and treatment. POGO uses POGONIS to support the care of children with cancer. POGO will provide ONLOOP with some of this information so that we can prepare personalized information toolkits for individuals who sign up.

Ontario Health, POGO, and ONLOOP respect the privacy of all individuals. We have safeguards in place to keep your personal information private and confidential. For more information, please visit www.ccohealth.ca/en/privacy/ or contact us: ONLOOP.info@sickkids.ca, and 416-813-1076.

9. Where is my information stored? Who will have access?

Your information will be stored in a secure and encrypted database. Only research study team members at The Hospital for Sick Children will have access to this database.

10. How long will my information be stored for?

The Hospital for Sick Children’s research policies require that we keep this information for 7 years after the end of the research study. After this, your information will be securely destroyed using best practices at that time.

11. I no longer wish to receive reminders for screening
tests. How do I turn them off?

You can check your reminder preferences by logging in to your account at ONLOOP.ca. Under “Preferences”, you can change your choices. Then, click “Save”.