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Retinoblastoma studies at SickKids

Dr. Helen Dimaras (Scientist, Hospital for Sick Children, Toronto) is inviting retinoblastoma survivors and their families to participate in two research studies.

What’s the Purpose of These Studies? The purpose of the first study is to gather information about the experiences, knowledge, research interests, and communication preferences of retinoblastoma survivors and their families. If you are eligible, you will be invited to complete a brief survey and then participate in a focus group. A focus group is a discussion, lasting up to 2.5 hours, involving up to ten retinoblastoma survivors or the immediate family of someone diagnosed with retinoblastoma.

The purpose of the second study is to create a list of people affected by retinoblastoma across Canada, called the Canadian Retinoblastoma Research Registry. You will be invited to complete a brief survey, which will give us permission to any (or none) of the following:

1. Contact you about retinoblastoma (e.g. email you research results); 2. Contact you about retinoblastoma research opportunities; 3. Share your information with other researchers so that these researchers can also contact you about retinoblastoma research opportunities.

These studies will help us: 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 led by retinoblastoma survivors and their families.

Who Can Participate? To participate in focus groups or the Canadian Retinoblastoma Research Registry, you must be: • 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 parents); and • A resident of Canada.

What’s Next? If you’d like to learn more about the focus groups or the Canadian Retinoblastoma Research Registry, please visit the website listed below, or contact the study team.

For more information: Visit: http://lab.research.sickkids.ca/dimaras/ Email: retinoblastoma.research@sickkids.ca or Call: 416-813-7654 Ext:203287

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