Evaluating health outcomes in retinoblastoma patients after treatment

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational study focuses on assessing health outcomes in patients who have undergone treatment for retinoblastoma. It involves collecting health information over time from patients and their family members through various methods, including vision assessments, tissue and saliva samples, and questionnaires. The study aims to define acute toxicity, subsequent malignant neoplasm risk, and visual outcomes in retinoblastoma survivors while also creating a biorepository for future research on genetic interactions related to the disease. Patients are divided into retrospective and prospective cohorts based on their treatment timelines.

Why it matters

Who can join: the full rules

* 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.

Where it's running

• Lurie Children's Hospital
  Chicago, Illinois, United States Recruiting
• University of Illinois, Chicago
  Chicago, Illinois, United States Recruiting
• University of Minnesoa
  Minneapolis, Minnesota, United States Recruiting
• Washington School of Medicine at St. Louis
  St Louis, Missouri, United States Recruiting
• Cincinnati Children's Hospital Medical Center
  Cincinnati, Ohio, United States Recruiting
• Children's Hospital of Philadelphia
  Philadelphia, Pennsylvania, United States Recruiting

Study contacts

• Principal investigator: Debra Friedman, MD — Vanderbilt Medical Center
• Study coordinator: Vanderbilt-Ingram Service for Timely Access
• Email: cip@vanderbilt.edu
• Phone: 800-811-8480

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.