Research on Health and Vision Outcomes After Treatment for Retinoblastoma in Children and Young Adults

What this Trial Is About

Researchers are studying health outcomes in patients who have been treated for retinoblastoma, a type of eye cancer. The study aims to understand acute treatment side effects, the risk of developing new cancers, visual outcomes, and psychosocial and physical effects in survivors compared to healthy siblings and standard data. The trial also explores genetic factors influencing disease and treatment responses through a specially annotated biorepository of patient tissues and DNA samples. Participants join one of two groups based on their treatment timeline. The retrospective group includes patients treated between 2008 and 2018 who provide saliva samples at least six months after treatment, undergo vision assessments, and complete questionnaires. The prospective group includes patients treated between 2018 and 2023 who provide saliva and tissue samples, undergo vision assessments at enrollment and follow-up times, and complete questionnaires. Immediate family members with retinoblastoma or the RB1 gene mutation may also provide saliva samples. During the study, participants undergo vision tests, provide tissue and saliva samples, and complete psychosocial and quality-of-life questionnaires at various times up to two years after treatment. Researchers will analyze genetic information and monitor acute toxicity and long-term outcomes through medical records and assessments. The total duration of participation varies with follow-up visits occurring up to two years after treatment, allowing comprehensive monitoring of health and vision outcomes.

Studying Health Outcomes After Treatment in Patients With Retinoblastoma