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Tracking Long-Term Health After Retinoblastoma Treatment

Follows people treated for retinoblastoma, an eye cancer, through vision checks and questionnaires.

Key facts

Who runs it
Vanderbilt-Ingram Cancer Center
Where
Toronto, CanadaSee the siteAlso in 1 other country, 10 sites
Trial code
Registry title
Studying Health Outcomes After Treatment in Patients With Retinoblastoma
Status
Recruiting
People taking part
900 people, planned
Started
24 Jan 2019
Expected to end
Jan 2031
Type of study
Observational, 2 groups
Treatments tested
  • Biospecimen collection
  • Vision assessment
  • Questionnaire administration
  • Quality of life assessment
  • Laboratory Biomarker Analysis
Record updated
19 September 2025

Who can take part

AI summary

From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.

The trial is looking for children and young people diagnosed with retinoblastoma (an eye cancer) on or after January 1, 2008. One sibling without retinoblastoma can also join.

Age
Diagnosed between the ages of 0 and 17.99 years.
Sex
All sexes can join.
Disease stage
Retinoblastoma inside one eye or both eyes (intraocular).
Earlier treatment
No limits on the type of treatment. People looking back at past treatment must be at least 6 months past the end of treatment. A prospective patient must not have begun treatment.

Main reasons for not taking part

  • Patients with diminished capacity cannot join.
  • People who cannot communicate in English, French, or Spanish cannot join.
  • Diagnosis before January 1, 2008 cannot join.

The registry criteria, word for word

Show all 9 criteriaShow less

Other 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

Where in Canada

Also in 1 other country, 10 sites

  • The Hosptial for Sick ChildrenToronto, CanadaContact: Roxanna NoronhaTaking people

About the trial

What the trial wants to find out

This trial studies health outcomes after treatment in patients with retinoblastoma. Gathering health information over time from patients and family members through vision assessments, samples of tissue and saliva, and questionnaires may help doctors learn more about what causes retinoblastoma, identify long-term health outcomes for patients with retinoblastoma, and find out which therapies may be the best for treating retinoblastoma

The 2 groups in the trial

  • Retrospective(biospecimens, vision assessment, questionnaires)

    Treatment: Biospecimen collection, Vision assessment, Questionnaire administration, Quality of life assessment, and Laboratory Biomarker Analysis

  • Prospective (biospecimens, vision assessment, questionnaires)

    Treatment: Biospecimen collection, Vision assessment, Questionnaire administration, Quality of life assessment, and Laboratory Biomarker Analysis

Questions to ask the study team

  1. How often do I need to come in, and for how long each time?
  2. Are travel costs paid?
  3. Can I keep my own doctor?
  4. What happens if I want to stop?

Contact the study team: see the registry record → Contacts and Locations

Print a page for my doctor

Data and sources

Registry record
Listed on ClinicalTrials.gov.
Official title
Research Into Visual Endpoints and RB Health Outcomes After Treatment (RIVERBOAT)
Plain-language title
Tracking Long-Term Health After Retinoblastoma TreatmentGenerated from the registry record. The registry title is the official one.
AI summary
From the trial's eligibility criteria. Read by machine on 12 November 2026.
Record updated
19 September 2025