2022 Virtual Retinoblastoma Research Symposium
Hosted by the Canadian Retinoblastoma Research Advisory Board (CRRAB), the Retinoblastoma Research Symposium brings together retinoblastoma patients, survivors, families, health professionals, and researchers.
Date and Time: January 15, 2022 11:00 AM – 5:30 PM Eastern Time
Location: Virtual via Gather Web Platform (event link will be sent to registrants 24 hours in advance)
Registration: Click here to register for this free event
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Background
Resulting from the Canadian Retinoblastoma Patient Engagement Strategy and hosted by CRRAB, historically, the Retinoblastoma Research Symposium is a two-day in person meeting. Although the COVID-19 pandemic precludes us from meeting in person, we will once again meet virtually to grow our community and continue building momentum for patient-oriented research in Canada. View our blog for highlights from the 2021, 2020 and 2019 symposia.
The Canadian Retinoblastoma Patient Engagement Strategy:
Led by the CRRAB, the strategy aims to create meaningful, co-directed retinoblastoma research that is relevant to those affected by retinoblastoma and improves outcomes. Three primary objectives of the Canadian Retinoblastoma Patient Engagement Strategy are to:
- Share research results with people affected by retinoblastoma;
- Include a large diverse group of people affected by retinoblastoma in research; and
- Promote research that is created and led by people affected by retinoblastoma.
CRRAB:
CRRAB was created December 2016 and is comprised of retinoblastoma survivors, families, health professionals and researchers. The general membership includes people affected by retinoblastoma (e.g. survivors, the immediate family of someone diagnosed with retinoblastoma), clinicians, allied healthcare providers, researchers, patient engagement experts, and policymakers. CRRAB’s aim is to create meaningful, co-directed retinoblastoma research that is relevant to patients and improves outcomes.
Symposium Agenda
Symposium Overview
The 2022 Retinoblastoma Research Symposium will be hosted on Gather, a web-conferencing software like Zoom, but with the added component of seeing the virtual “room” you and others are occupying, and with the ability to move around and interact with other participants based on your locations in the room, just like real life. There is no need to download any software or create a login to use the platform. Please see the Gather Town guide and instruction video below in the resource section to prepare for the event.
An alternative to Gather (i.e., guided event participation via Zoom) will be made available to upon request in order to accommodate our attendees (e.g., due to visual impairment, technical challenges, etc.). You will be able to request this option during registration.
Pre-Meeting Intro: Overview of the meeting will be shared with the new and returning attendees so you can get the most out of this event.
Welcome: Official start to the meeting with welcome remarks and housekeeping items.
CRRAB Birthday Celebration: A celebration to mark the 5th Retinoblastoma Research Symposium.
Self-Guided Information Rooms: Virtual rooms will be open for attendees to asynchronously learn about CRRAB tools, research projects that are recruiting participants, and the Canadian Retinoblastoma Society.
Networking: Attendees are welcome to utilize the break time to network amongst each other or join themed rooms to discuss topics related to retinoblastoma.
CRRAB Annual General Meeting: Existing CRRAB members will come together with the broader retinoblastoma community will learn more about CRRAB and set the course for 2022.
Child Life Activity: A specialized children’s activity developed and guided by a Certified Child Life Specialist. Adult attendees are encouraged to observe this session to learn more about child life and the importance of effective coping through play, preparation, education, and creative self-expression activities. Please see instructions and materials information in the file below in the resource section.
Research Workshops: Attendees will attend a breakout session to learn more about one of the projects currently underway addressing the Top Retinoblastoma Research Priorities:
- Priority 1 – Early Diagnosis (Pathway to Diagnosis Survey & Red Reflex Review)
- Priority 2 – Second Cancer Screening
- Priority 3 – Psychosocial Support (Psychosocial Needs Survey)
- Priority 9 – Pathway of Care (Retinoblastoma Journey Maps)
- Priority 11 – Development of Novel Agents (Ophthalmology Biobank)
Guest Speaker – Stéphanie Morin-Robert: Stéphanie is a performing artist and creator by profession who has toured festivals, venues and clubs across the world with her multidisciplinary shows including the award-winning show “Blindside”, a comedic recounting of her life as a seven year-old with a prosthetic eye. Stéphanie is a retinoblastoma survivor who has woven her retinoblastoma journey into this performance by sharing her experiences with bullying and how she managed to work through her insecurities.