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

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Retinoblastoma
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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