Studying Health Outcomes After Treatment in Patients With Retinoblastoma

Launched by VANDERBILT-INGRAM CANCER CENTER · Apr 27, 2019

Keywords

ClinConnect Summary

This clinical trial is focused on understanding the long-term health effects of treatment in patients who have had retinoblastoma, a type of eye cancer. Researchers are collecting health information through various methods, including vision tests, tissue and saliva samples, and questionnaires. The goal is to learn more about the causes of retinoblastoma and to determine which treatments work best, ultimately helping doctors provide better care for future patients.

To participate in this trial, patients should have been diagnosed with unilateral (one eye) or bilateral (both eyes) intraocular retinoblastoma between the ages of 0 and 17.99 years, with a diagnosis date on or after January 1, 2008. Patients who are at least six months post-treatment or those who have not yet started treatment are eligible. Additionally, one healthy sibling close in age to the patient may also be included in the study. All participants, or their guardians, will need to provide written consent, and communication must be in English, French, or Spanish. Participants can expect to share their experiences and health information, which will contribute to important research aimed at improving outcomes for future patients with retinoblastoma.

Gender

ALL

Eligibility criteria

• • Unilateral or bilateral intraocular retinoblastoma
• • Diagnosis between the ages of 0 - 17.99 years
• • Diagnosis on or after January 1, 2008
• • No exclusions based on primary or secondary treatment modalities
• • Retrospective group patients must be ≥ 6 months post end of treatment at study entry
• • For those already at this timepoint, they are now eligible
• • For those in treatment, or otherwise not yet at this timepoint, they are eligible once at they are ≥ 6 months post end of treatment
• • Prospective group patients must not have begun treatment
• • Patients with diminished capacity will not be enrolled.
• • Language: Patients must be able to communicate in English, French, or Spanish
• • Sibling Cohort: One sibling, not affected by retinoblastoma will be enrolled, preference for the sibling closest in age to the RB patient.
• • Regulatory Requirements: All patients and/or their parents or legal guardians must sign a written informed consent. All institutional, FDA, and NCI requirements for human studies must be met.