Background

CRRAB aims to create meaningful, co-directed retinoblastoma research that is relevant to patients and improves outcomes. The general membership of CRRAB includes people affected by retinoblastoma (e.g., survivors, parents, siblings, etc.), health professionals, researchers, patient engagement experts, and policymakers.

Each year CRRAB hosts an annual research symposium. During this meeting, we set goals for the upcoming year.

2022 CRRAB Goals

2022 Monthly Working Group Goals	Achievement (Year to Date)
Enroll 12 newly diagnosed families in RB Research Community	0
Enroll 10 additional families in RB Research Community	1
Recruit French speaking patient to CRRAB	0
Recruit French speaking health professional to CRRAB	0
Enroll 1 patient from Quebec to RB Research Community	0
Develop a Standard Operating Procedure to guide health professionals through sharing CRRAB resources to newly diagnosed families	0
Create 4 written plain language article summaries	1
Host 4 "Cup of Tea" virtual journal club events	0
Create 4 "Cup of Tea" video recordings	0
Create 4 "Cup of Tea" podcast episodes	0

CRRAB Activities

To achieve our goals, CRRAB members volunteer to complete a wide variety of activities. EXAMPLES of these activities include:

• Survivors and parents tell others affected by retinoblastoma and their clinical care team (e.g., Ocularist or Ophthalmologist) about the Canadian Retinoblastoma Research Community
• Health professionals share information about the Canadian Retinoblastoma Research Community with their patients and their families
• Researchers partner with patients to develop new studies and write blog posts about new research results

2022 Working Group Meeting Schedule

We meet once a month over videoconference to collaborate and share progress. Information is also shared on this website for those that cannot attend the meetings.

• Saturday Monthly Working Group – 2nd Saturday of the month, 12 PM Eastern Time
• Wednesday Monthly Working Group – 2nd Wednesday of the month, 12 PM Eastern Time

If you are interested in joining one of the Monthly Working Groups, please fill out the form below.

You may attend whichever meeting is most convenient for your schedule. Meetings will cover the same topics and notes from both meetings are shared on this website.

Action List

Please refer to our list for a list of actions that have been assigned during our Monthly Working Group calls and the current status. If you would like to address any of the actions, please fill out the form below.

Action Item	Assigned To
Share CRRAB Social Media about the booklet with your networks	All
Nominate a Retinoblastoma Research Champion	All
Work on plain language article summary	Mitch
Create video explanation of "what is plain language summary"	Taline
Create video for social media for booklet	Taline