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

This study is ongoing, but not recruiting participants.
St. Jude Children's Research Hospital
Information provided by (Responsible Party):
Memorial Sloan-Kettering Cancer Center Identifier:
First received: March 13, 2008
Last updated: April 23, 2014
Last verified: April 2014

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.

Condition Intervention
Behavioral: Questionnaires

Study Type: Observational
Study Design: Observational Model: Cohort
Time Perspective: Retrospective
Official Title: Retinoblastoma Survivor Study: Assessment of General Health and Quality of Life

Resource links provided by NLM:

Further study details as provided by Memorial Sloan-Kettering Cancer Center:

Primary Outcome Measures:
  • 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 ] [ Designated as safety issue: No ]

Secondary Outcome Measures:
  • 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 ] [ Designated as safety issue: No ]

Enrollment: 473
Study Start Date: March 2008
Estimated Study Completion Date: March 2015
Estimated Primary Completion Date: March 2015 (Final data collection date for primary outcome measure)
Groups/Cohorts Assigned Interventions
adult survivors of retinoblastoma
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).


Ages Eligible for Study:   18 Years and older
Genders Eligible for Study:   Both
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study Population

Adult survivors of retinoblastoma will be identified via the NCI and New York (MSKCC)databases and offered participation in the study.


Inclusion Criteria:

  • Patient diagnosed with retinoblastoma at any age
  • At least 18 years at the time of study enrollment
  • Able to provide informed consent
  Contacts and Locations
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.

Please refer to this study by its identifier: NCT00639301

United States, New York
Memorial Sloan-Kettering Cancer Center
New York, New York, United States, 10065
Sponsors and Collaborators
Memorial Sloan-Kettering Cancer Center
St. Jude Children's Research Hospital
Principal Investigator: Ira Dunkel, MD Memorial Sloan-Kettering Cancer Center
  More Information

Additional Information:
No publications provided

Responsible Party: Memorial Sloan-Kettering Cancer Center Identifier: NCT00639301     History of Changes
Other Study ID Numbers: 08-019
Study First Received: March 13, 2008
Last Updated: April 23, 2014
Health Authority: United States: Institutional Review Board

Keywords provided by Memorial Sloan-Kettering Cancer Center:
Quality of Life

Additional relevant MeSH terms:
Eye Diseases
Eye 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 processed this record on November 24, 2014