Studying Health Outcomes After Treatment in Patients With Retinoblastoma
This research study aims to understand the health and experiences of children and young people who have been treated for retinoblastoma, a cancer affecting the eye. Doctors will gather health information over time by looking at vision, collecting saliva and tissue samples, and asking patients and their families to fill out questionnaires. This will help them learn more about what causes retinoblastoma, what long-term health issues might arise, and which treatments are most effective. The study also creates a special bank of samples and information to help future research into the disease and its genetic links. The goal is to improve care for all retinoblastoma patients.
At a glance
What is this study about?
This study is about understanding how children and young people who have been treated for retinoblastoma – a type of eye cancer – are doing in the years following their treatment. The doctors want to learn about their general health, how well they can see, and how the experience has affected them and their families.
To do this, they will collect information in a few ways. They will look at vision, ask patients and their families to answer questions in questionnaires, and collect tiny samples of saliva (spit) and tissue (like from previous operations if available). This information will help them find out if there are any long-term health effects from retinoblastoma or its treatments. They also hope to learn more about the causes of retinoblastoma and work out which treatments might be the best choices for other children in the future.
The study also involves setting up a special collection of tissue samples and information called the RIVERBOAT-CAPTAIN biorepository. This is like a library for scientists, holding important biological samples and detailed patient information. Researchers can then use this collection to study the condition even more deeply, looking at the genes involved and how they might affect how the disease behaves and how it's treated. This will help doctors understand why some children respond to treatment differently than others.
Key takeaways
- This study focuses on understanding the long-term health of retinoblastoma patients.
- It collects information through vision tests, samples (saliva, tissue), and questionnaires.
- The goal is to improve future treatments and care for children with retinoblastoma.
- Researchers are also building a collection of samples for future studies on the genetics of retinoblastoma.
- Participation involves no new medicines or treatments, only information gathering.
- You can withdraw from the study at any time without affecting your medical care.
Who may be eligible?
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.
Could this study suit you?
Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.
- Were you diagnosed with retinoblastoma between 2008 and 2023?
- Was your retinoblastoma only in your eye(s)?
- Are you under 18 years old?
- If you finished treatment some time ago, are you at least 6 months past its completion?
- Can you or your parent/guardian communicate in English, French, or Spanish?
- Are you a healthy sibling of someone with retinoblastoma, and willing to provide a saliva sample?
What does participation involve?
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.
Potential risks and benefits
Locations (11)
- Lurie Children's HospitalVerified postcodeChicago, United States· Recruiting
- University of Illinois, ChicagoVerified postcodeChicago, United States· Recruiting
- University of MinnesoaVerified postcodeMinneapolis, United States· Recruiting
- Washington School of Medicine at St. LouisVerified postcodeSt Louis, United States· Recruiting
- Cincinnati Children's Hospital Medical CenterVerified postcodeCincinnati, United States· Recruiting
- Children's Hospital of PhiladelphiaVerified postcodePhiladelphia, United States· Recruiting
- Vanderbilt-Ingram Cancer CenterVerified postcodeNashville, United States· Recruiting
- MD Anderson Cancer CenterVerified postcodeHouston, United States· Recruiting
- Texas Childeren's HospitalVerified postcodeHouston, United States· Recruiting
- Children's Hospital of WisconsinVerified postcodeMilwaukee, United States· Recruiting
- The Hosptial for Sick ChildrenVerified postcodeToronto, Canada· Recruiting
Common questions
What is retinoblastoma?
Retinoblastoma is a rare type of cancer that develops in the retina, the light-sensitive lining at the back of the eye, mainly affecting young children.
Why is this study important for UK patients?
This study aims to improve our understanding of retinoblastoma, its long-term effects, and the best treatments, which will ultimately help children with this condition in the UK and globally.
Will I have to take any new medicine or treatment?
No, this study is about gathering information, not testing new medicines or treatments. It looks at the health outcomes after your retinoblastoma treatment.
How much time will I need to commit to the study?
Your commitment will involve a few vision checks and providing saliva samples. You'll also need to fill out questionnaires a couple of times over a few years, which can be done at home.
Who will see my personal information?
Your privacy is very important. Only authorised research staff will have access to your information, and all data will be handled confidentially to protect your identity.
How to find out more
Vanderbilt-Ingram Service for Timely Access
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
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