Information for Researchers
As a part of the Canadian Retinoblastoma Research Registry (CRRR), registrants can choose to be contacted by the research team and external researchers regarding research opportunities to:
- Participate in a research study; and
- If there is a position available on the research study team.
Please complete the Data Access Request form and email the signed PDF to firstname.lastname@example.org if you would like to engage with retinoblastoma survivors and families who are on the registry.
The registry is open to individuals meeting the following criteria:
- 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.
Currently, there are over 40 registrants. It is our aim to have 360 registrants over the next ten years.
The data request form asks for the following:
- Applicant contact information
- Research project description
- Ethics board approval
- Justification for data request
The Canadian Retinoblastoma Research Advisory Board’s (CRRAB) Research Advisory Working Group will review all data access approximately every 6 weeks. The working group will ensure all components of the form are valid in order to approve or reject requests or ask for additional information.
If approved, the Research Advisory Working Group will submit an amendment to REB, including the application of the SickKids scientist named as Co-Investigator and legal. All suitable registrants, using the lease amount of information necessary for the research project, will be extracted from the registry and sent to the study’s PI, using OneMail or Secure File Transfer. Data shared with external researchers will be governed by the confidentiality practices at their institutions. Altogether, data access requests have a two- to three-month turnaround period.
For more information
Call: 416-813-7654 Ext:203287