This trial is active, not recruiting.

Condition retinoblastoma
Treatment questionnaires
Sponsor Memorial Sloan Kettering Cancer Center
Collaborator National Cancer Institute (NCI)
Start date March 2008
End date March 2017
Trial size 473 participants
Trial identifier NCT00639301, 08-019


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.

United States No locations recruiting
Other countries No locations recruiting

Study Design

Observational model cohort
Time perspective retrospective
adult survivors of retinoblastoma
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 adult 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 adult survivors of childhood retinoblastoma Fear of disease recurrence/development of other cancers, Health behaviors, Body image, etc.
time frame: conclusion of study

Eligibility Criteria

Male or female participants at least 18 years old.

Inclusion Criteria: - Patient diagnosed with retinoblastoma at any age - At least 18 years at the time of study enrollment - Able to provide informed consent

Additional Information

Official title Retinoblastoma Survivor Study: Assessment of General Health and Quality of Life
Principal investigator Ira Dunkel, MD
Trial information was received from ClinicalTrials.gov and was last updated in November 2016.
Information provided to ClinicalTrials.gov by Memorial Sloan Kettering Cancer Center.