Have you been affected by retinoblastoma? Please consider participating in our research study!
Psychosocial support is a top Retinoblastoma Research Priority in Canada. Help us uncover the psychosocial needs of retinoblastoma patients and families.
Please scroll to the bottom of this page to participate.
Who can participate?
Participant can be:
- Retinoblastoma patient,
- Retinoblastoma survivor, or
- Immediate caregiver of someone diagnosed with retinoblastoma
Participant must also:
- Be 16 years of age or older,
- Have received all or part of their care in Canada
- Read and understand English
Understanding all family members’ unique perspectives is of utmost importance to uncover the needs of the whole community. To capture a representative sample of the Canadian retinoblastoma community in this project, it is estimated that we need 400 questionnaire responses. To this end, please encourage all eligible members of your family to fill out their own questionnaire.
What’s involved?
A questionnaire that will take approximately 40 minutes to complete online or in-person. The
questionnaire will collect information on:
- Demographics and experience with retinoblastoma,
- Supportive care needs and
- Access to and need for information and services.
All questions are optional.
Are there benefits?
This will be the first study describing the supportive care needs and psychosocial distress of Canadian retinoblastoma patients, survivors and parents, and will uncover whether these needs are being met.
There are no direct benefits from participating in this research, but the information you provide will be helpful for clinicians, researchers and future patients. This research may help us develop an intervention to improve psychosocial outcomes for retinoblastoma patients.
Contact info
Principal Investigator: Dr. Helen Dimaras
Email: Retinoblastoma.research@sickkids.ca
Phone: 416-813-7654 Ext: 207438