Join a community of people affected by retinoblastoma
How does the community work?
This community is a list of members affected by retinoblastoma, either personally or professionally. You can join by completing a brief survey. As a member of the community, you can choose to:
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Receive updates on new retinoblastoma research results; and
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Engage in retinoblastoma research.
Why join?
Currently there is a gap in moving research from the lab to bedside and many important voices are missing from the conversation. We want to change retinoblastoma research so that it is relevant to patients and, ultimately, to improve care.
By joining, you are helping us:
Consider joining the registry if you are:
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A retinoblastoma survivor or the immediate family of someone diagnosed with retinoblastoma;
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18 years of age or older or an emancipated minor (i.e. are married and/or a parent); and
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A resident of Canada.
The Canadian Retinoblastoma Research Registry was developed by Dr. Helen Dimaras, a scientist from The Hospital for Sick Children in Toronto. It is a part of the broader Canadian Retinoblastoma Patient Engagement Strategy that is led by the Canadian Retinoblastoma Research Advisory Board (CRRAB).
CRRAB is comprised of people affected by retinoblastoma (e.g., survivors, the immediate family of someone diagnosed with retinoblastoma etc.), clinicians, allied healthcare providers, researchers, patient engagement experts and policymakers.
If you would like more information about CRRAB or to provide your feedback, please email us at: retinoblastoma.research@sickkids.ca.
Your privacy is our priority.
No information about who you are will be given to anyone or be published without your permission, unless required by law.
Your information will be secure.
The Canadian Retinoblastoma Research Registry will be stored in a secure, locked location. Any published study results will not reveal your identity.
We respect your time.
With your permission, we will securely share your contact and personal data will external researchers. Or, if you do not give permission to securely share your information, then only the study team will have access to your data.
Information shared with external researchers will only be used for single study use and will be governed by the confidentiality practices at their institution.
You can withdraw from Canadian Retinoblastoma Research Registry at any time by emailing: retinoblastoma.research@sickkids.ca.
Canada is a vast and diverse country. Every retinoblastoma patient and family member has a unique and important voice to be heard. Help us expand our community by spreading the word!
Have any ideas on recruitment? We want your feedback.
Researchers must complete the data access request form to access registrant information.
Find out more here.
Our Supporters:
