Brief Title
Retinoblastoma Survivor Study: Assessment of General Health and Quality of Life
Official Title
Retinoblastoma Survivor Study: Assessment of General Health and Quality of Life
Brief 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.
Study Type
Observational
Primary Outcome
To describe the long-term health status of long term survivors of childhood retinoblastoma, General medical outcomes, vision status, Rates of second cancer
Secondary Outcome
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.
Condition
Retinoblastoma
Intervention
Questionnaires
Study Arms / Comparison Groups
1
Description: Long term survivors of retinoblastoma
Publications
* Includes publications given by the data provider as well as publications identified by National Clinical Trials Identifier (NCT ID) in Medline.
Recruitment Information
Recruitment Status
Behavioral
Estimated Enrollment
473
Start Date
March 2008
Completion Date
March 2023
Primary Completion Date
March 2023
Eligibility Criteria
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
Gender
All
Ages
18 Years - N/A
Accepts Healthy Volunteers
No
Contacts
Danielle Novetsky Friedman, MD, ,
Location Countries
United States
Location Countries
United States
Administrative Informations
NCT ID
NCT00639301
Organization ID
08-019
Responsible Party
Sponsor
Study Sponsor
Memorial Sloan Kettering Cancer Center
Collaborators
National Cancer Institute (NCI)
Study Sponsor
Danielle Novetsky Friedman, MD, Principal Investigator, Memorial Sloan Kettering Cancer Center
Verification Date
April 2022