The Canadian Retinoblastoma Research Registry

///The Canadian Retinoblastoma Research Registry
The Canadian Retinoblastoma Research Registry 2017-08-31T17:03:09+00:00

Join a community of people affected by retinoblastoma

Click here to learn more and participate

How does the registry work?

The registry is a list of members in the retinoblastoma community. You can join the registry by completing a brief survey. As a member of the registry, you can choose to:

  1. Receive updates on new retinoblastoma research results; and

  2. 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 you and your family and, ultimately, to improve care.

By joining the registry, you are helping us:

1) Share research results, 2) Include more people in research, and 3) Promote research that is created and led by patients and families

Consider joining the registry if you are:

  • A retinoblastoma survivor or the immediate family of someone diagnosed with retinoblastoma;

  • 18 years of age or older or an emancipated minor (i.e. are married and/or a parent); and

  • 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).

Logo for the Canadian Retinoblastoma Research Advisory Board where DNA strand makes two people, one with unilateral retinoblastoma.

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!

View and download recruitment materials here

 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.

 

Participate here

 

For more information:

Email: retinoblastoma.research@sickkids.ca

Call: 416-813-7654 Ext:203287

Our Supporters:

We C Hope Logo

Canadian Retinoblastoma Society Logo

The official twitter account for The Hospital for Sick Children (SickKids) profile picture.