Retinoblastoma Survivor Study: Assessment of General Health and Quality of Life
This study is ongoing, but not recruiting participants.
Sponsor:
Memorial Sloan-Kettering Cancer Center
Collaborators:
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
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Purpose
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 |
|---|---|
|
Retinoblastoma |
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:
Genetics Home Reference related topics:
retinoblastoma
MedlinePlus related topics:
Cancer
U.S. FDA Resources
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 2014 |
| Estimated Primary Completion Date: | March 2014 (Final data collection date for primary outcome measure) |
| Groups/Cohorts | Assigned Interventions |
|---|---|
|
1
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).
|
Eligibility| 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.
Criteria
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
Please refer to this study by its ClinicalTrials.gov identifier: NCT00639301
Locations
| 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
Investigators
| Principal Investigator: | Ira Dunkel, MD | Memorial Sloan-Kettering Cancer Center |
More Information
Additional Information:
No publications provided
| Responsible Party: | Memorial Sloan-Kettering Cancer Center |
| ClinicalTrials.gov Identifier: | NCT00639301 History of Changes |
| Other Study ID Numbers: | 08-019 |
| Study First Received: | March 13, 2008 |
| Last Updated: | April 19, 2013 |
| Health Authority: | United States: Institutional Review Board |
Keywords provided by Memorial Sloan-Kettering Cancer Center:
|
Survivor Quality of Life Eye |
Additional relevant MeSH terms:
|
Retinoblastoma Neoplasms, Neuroepithelial Neuroectodermal Tumors Neoplasms, Germ Cell and Embryonal Neoplasms by Histologic Type Neoplasms Neoplasms, Glandular and Epithelial |
Neoplasms, Nerve Tissue Retinal Neoplasms Eye Neoplasms Neoplasms by Site Eye Diseases Retinal Diseases |
ClinicalTrials.gov processed this record on May 21, 2013