The Retinoblastoma Research Registry is now the Retinoblastoma Research Community!

Since 2016 the Canadian Retinoblastoma Research Registry enrolled Canadian retinoblastoma survivors and the immediate family members of those diagnosed with retinoblastoma who were interested in receiving retinoblastoma research results, participating in research studies, and/or developing new research projects.

We are happy to announce that with a recent overhaul the Registry is now the Retinoblastoma Research Community which now invites Canadian and international patients, survivors, family members, retinoblastoma researchers, health care professionals, and advocates to promote and develop patient-oriented retinoblastoma research.

Consider joining the Retinoblastoma Research Community if you are:

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

And one or more of the following: 

• Someone with lived experience of retinoblastoma (i.e., patient, survivor, family member, caregiver); 
• A health care professional with experience relevant to retinoblastoma; 
• A researcher with interest in retinoblastoma research; 
• An advocate engaged in supporting the retinoblastoma community. 

By joining the Community you can agree to any combination of the following:

• Receive emails about retinoblastoma, including research results, updates about the Retinoblastoma Research Community, and upcoming events.
• Be contacted by the CRRAB team if: 
  • You appear to fit a research study that is seeking participants. 
  • There is a position available on a research study team. 
• Share your contact information with other researchers so that these researchers can also contact you if:  
  • You appear to fit a research study that is seeking participants.
  • There is a position available on a research study team.  

If you are interested in joining the Retinoblastoma Research Community please click below to be directed to the information page.