Archive | Registry RSS for this section

Inform Patients and Families about the Canadian Retinoblastoma Research Registry – see post for resource downloads and contact information

Adults affected by retinoblastoma (e.g., survivors and immediate family of those diagnosed with retinoblastoma) are invited to join the Canadian Retinoblastoma Research Registry.

The purpose of the registry is to:

  1. Share research results with retinoblastoma survivors and their families;
  2. Include a large and diverse group of retinoblastoma survivors and their families in research; and
  3. Promote research that is created and lead by retinoblastoma survivors and their families.


This study is part of the Canadian Retinoblastoma Patient Engagement Strategy led by Dr. Helen Dimaras (Scientist, SickKids). For more information visit our website or email