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NCT00639301 Clinical Trial

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

Retinoblastoma Clinical Trial

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

Clinical Trial Details — Status: Recruiting

Administrative data
NCT number NCT00639301
Other study ID # 08-019
Secondary ID
Status Recruiting
Phase
First received
Last updated
Start date March 2008
Est. completion date March 2025

Study information
Verified date February 2024
Source Memorial Sloan Kettering Cancer Center
Contact Danielle Novetsky Friedman, MD
Phone 212-639-7376
Is FDA regulated No
Health authority
Study type Observational

Clinical Trial Summary

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.

Recruitment information / eligibility
Status Recruiting
Enrollment 1000
Est. completion date March 2025
Est. primary completion date March 2025
Accepts healthy volunteers No
Gender All
Age group 18 Years and older
Eligibility 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

Study Design

Related Conditions & MeSH terms

Intervention

Behavioral:
• Questionnaires
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).

Locations
Country Name City State
United States Memorial Sloan Kettering Cancer Center New York New York

Sponsors (3)
Lead Sponsor Collaborator
Memorial Sloan Kettering Cancer Center National Cancer Institute (NCI), St. Jude Children's Research Hospital

Country where clinical trial is conducted

United States, 

Outcome
Type Measure Description Time frame Safety issue
Primary To describe the long-term health status of long term survivors of childhood retinoblastoma, General medical outcomes, vision status, Rates of second cancer conclusion of study
Secondary 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. conclusion of study
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