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

This study is ongoing, but not recruiting participants.
Sponsor:
Collaborators:
National Cancer Institute (NCI)
St. Jude Children's Research Hospital
Information provided by (Responsible Party):
Memorial Sloan-Kettering Cancer Center
ClinicalTrials.gov Identifier:
NCT00639301
First received: March 13, 2008
Last updated: April 19, 2013
Last verified: April 2013
History of Changes

March 13, 2008
April 19, 2013
March 2008
March 2014   (final data collection date for primary outcome measure)
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 ]
Same as current
Complete list of historical versions of study NCT00639301 on ClinicalTrials.gov Archive Site
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 ]
Same as current
Not Provided
Not Provided
 
Retinoblastoma Survivor Study: Assessment of General Health and Quality of Life
Retinoblastoma Survivor Study: Assessment of General Health and Quality of Life

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.
Not Provided
Observational
Observational Model: Cohort
Time Perspective: Retrospective
Not Provided
Not Provided
Non-Probability Sample

Adult survivors of retinoblastoma will be identified via the NCI and New York (MSKCC)databases and offered participation in the study.
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).
1
adult survivors of retinoblastoma
Intervention: Behavioral: Questionnaires
Not Provided

*   Includes publications given by the data provider as well as publications identified by ClinicalTrials.gov Identifier (NCT Number) in Medline.
 
Active, not recruiting
473
March 2014
March 2014   (final data collection date for primary outcome measure)

Inclusion Criteria:

  • Patient diagnosed with retinoblastoma at any age
  • At least 18 years at the time of study enrollment
  • Able to provide informed consent
Both
18 Years and older
No
Contact information is only displayed when the study is recruiting subjects
United States
 
NCT00639301
08-019
Not Provided
Memorial Sloan-Kettering Cancer Center
Memorial Sloan-Kettering Cancer Center
  • National Cancer Institute (NCI)
  • St. Jude Children's Research Hospital
Principal Investigator: Ira Dunkel, MD Memorial Sloan-Kettering Cancer Center
Memorial Sloan-Kettering Cancer Center
April 2013

ICMJE     Data element required by the International Committee of Medical Journal Editors and the World Health Organization ICTRP