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900 retinoblastoma survivors join landmark study to uncover Long-Term health secrets

NCT ID NCT03932786

Knowledge-focused Sponsor: Vanderbilt-Ingram Cancer Center Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 26, 2026 · Last updated Jun 26, 2026 · Updated 1 time

Summary

This study follows 900 children who were treated for retinoblastoma, a rare eye cancer, to track their long-term health. Researchers will collect vision tests, tissue and saliva samples, and questionnaires from patients and their siblings. The goal is to learn more about what causes the disease, identify late effects of treatment, and find the best therapies for the future.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this study could help doctors better understand the long-term effects of retinoblastoma treatments and improve future care.
What could go wrong
This is an observational study, not a treatment trial. It will not directly test a new therapy, and results may take years to influence clinical practice.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 900 people

The number the study aims to enrol. It can still change while the study runs.

Started

Jan 2019

Expected to finish

Jan 2031

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Retrospective patients (those treated between 2008 and 2018) identified by each site at the start of the study period and prospective patients (those treated between 2018 and 2023) identified at the time of diagnosis by each site during the study period with unilateral or bilateral intraocular retinoblastoma

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

Sex

Anyone

Healthy volunteers

Accepted

You do not need to have the condition being studied to take part.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

* 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.

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Get notified about this study

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Conditions

The condition(s) this trial relates to.

intraocular retinoblastoma retinoblastoma unilateral retinoblastoma

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Biological sibling Cancer survivor Intraocular retinoblastoma Retinoblastoma Unilateral retinoblastoma

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    11 sites in 2 countries. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Children's Hospital of Philadelphia

    RECRUITING

    Philadelphia, Pennsylvania, 19104, United States

  • Children's Hospital of Wisconsin

    RECRUITING

    Milwaukee, Wisconsin, 53226, United States

  • Cincinnati Children's Hospital Medical Center

    RECRUITING

    Cincinnati, Ohio, 45229, United States

  • Lurie Children's Hospital

    RECRUITING

    Chicago, Illinois, 60611, United States

  • MD Anderson Cancer Center

    RECRUITING

    Houston, Texas, 77030, United States

  • Texas Childeren's Hospital

    RECRUITING

    Houston, Texas, 77030, United States

  • The Hosptial for Sick Children

    RECRUITING

    Toronto, Canada

  • University of Illinois, Chicago

    RECRUITING

    Chicago, Illinois, 60612, United States

  • University of Minnesoa

    RECRUITING

    Minneapolis, Minnesota, 55455, United States

  • Vanderbilt-Ingram Cancer Center

    RECRUITING

    Nashville, Tennessee, 37232, United States

  • Washington School of Medicine at St. Louis

    RECRUITING

    St Louis, Missouri, 63110, United States

More trials for these conditions

Other studies related to the condition(s) this trial covers.