Retinoblastoma Survivor Study: Assessment of General Health and Quality of Life

The purpose of this study is to find out about the quality of life and health in a group of adults who had retinoblastoma when they were children. By quality of life, we mean how you are feeling about being satisfied with things in your life, including your physical health, your emotional health, and your ability to carry out daily activities. We hope that this information will help us provide better care to future children with retinoblastoma and better follow-up care for survivors of retinoblastoma.

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This study is active but is not currently recruiting participants.

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Key information

Conditions

Retinoblastoma Eye Diseases Eye Diseases, Hereditary Eye Neoplasms Neoplasms Neoplasms by Histologic Type Neoplasms by Site Neoplasms, Germ Cell and Embryonal Neoplasms, Glandular and Epithelial Neoplasms, Nerve Tissue Neoplasms, Neuroepithelial Neuroectodermal Tumors Retinal Diseases Retinal Neoplasms

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

Memorial Sloan Kettering Cancer Center

New York, 10065, United States

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

Patient diagnosed with retinoblastoma at any age
At least five years from completion of all retinoblastoma-directed therapy
Able to provide informed consent and/or assent, if indicated

Treatment and study plan

Questionnaires

Behavioral

The survey will be administered by mail or telephone interview, based upon the participant preference. The survey has been adapted from the 2008 questionnaire being administered through the CCSS (11); it has been supplemented with questions addressing areas of interest specific to the retinoblastoma survivor population (eg, validated instruments that assess visual impairment).

Primary outcomes

To describe the long-term health status of long term survivors of childhood retinoblastoma, General medical outcomes, vision status, Rates of second cancer

Time frame: conclusion of study

Secondary outcomes

To describe the quality of life and psychosocial functioning of long term survivors of childhood retinoblastoma Fear of disease recurrence/development of other cancers, Health behaviors, Body image, etc.

Time frame: conclusion of study

Sponsors and collaborators

Lead sponsor

Memorial Sloan Kettering Cancer Center

Other

Collaborators

National Cancer Institute (NCI)
St. Jude Children's Research Hospital

Registry information

Important dates

Study start: 2008
Primary completion: 2027
Study completion: 2027
First posted: Mar 20, 2008
Registry last updated: Feb 2, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Published trials that share one or more normalized conditions with this study.

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