Studying Health Outcomes After Treatment in Patients With Retinoblastoma

This study is looking for children and young people up to 18 years old who have been diagnosed with retinoblastoma at some point since January 2008. They need to have cancer that affected only their eye, not elsewhere in the body.

There are two main groups: one for those who were treated between 2008 and 2018 (retrospective group) and another for those treated between 2018 and 2023 (prospective group). If you're in the retrospective group, you need to be at least 6 months past finishing your treatment to join. If you're in the prospective group, you would join before you start treatment.

They are also looking for a sibling of a child with retinoblastoma to take part, ideally the one closest in age, as long as that sibling does not have retinoblastoma themselves. All participants or their parents/guardians must be able to understand and speak English, French, or Spanish.

If you decide to take part, you'll be involved in the study by providing some information and samples. For those who were treated in the past (retrospective group), this will involve providing a saliva sample, having your vision checked (at least once, possibly twice), and filling out questionnaires (once, then again two years later). Any tissue samples from your past surgery will also be used.

For those starting treatment now (prospective group), you would provide a saliva sample at the beginning and again 6 months after treatment. Your vision would be checked at the start, at 6 months, and 18 months after treatment. You'd also fill out questionnaires (once, then again two years later), and tissue samples from any surgery would be collected. If you're a sibling, you'd only need to provide a saliva sample. Each visit for vision checks or sample collection would be arranged by the study team.