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.
En un coup d'œil
De quoi parle cette étude ?
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.
Points clés
- 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.
Qui peut être éligible ?
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.
Cet étude pourrait-elle vous convenir ?
Répondez à ces questions rapides pour voir si vous êtes éligible. Ceci est un guide uniquement — l'équipe de recherche prend la décision finale.
- 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?
En quoi consiste la participation ?
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.
Risques et avantages potentiels
Emplacements (11)
- Lurie Children's HospitalCode postal vérifiéChicago, États-Unis· Recrutement
- University of Illinois, ChicagoCode postal vérifiéChicago, États-Unis· Recrutement
- University of MinnesoaCode postal vérifiéMinneapolis, États-Unis· Recrutement
- Washington School of Medicine at St. LouisCode postal vérifiéSaint Louis, États-Unis· Recrutement
- Cincinnati Children's Hospital Medical CenterCode postal vérifiéCincinnati, United States· Recrutement
- Children's Hospital of PhiladelphiaCode postal vérifiéPhiladelphie, États-Unis· Recrutement
- Vanderbilt-Ingram Cancer CenterCode postal vérifiéNashville, United States· Recrutement
- Centre de Cancérologie MD AndersonCode postal vérifiéHouston, États-Unis· Recrutement
- Texas Childeren's HospitalCode postal vérifiéHouston, États-Unis· Recrutement
- Children's Hospital of WisconsinCode postal vérifiéMilwaukee, United States· Recrutement
- The Hosptial for Sick ChildrenCode postal vérifiéToronto, Canada· Recrutement
Questions fréquentes
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.
Qui verra mes informations personnelles ?
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.
Comment en savoir plus
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