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2020 Retinoblastoma Research Symposium

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Peter Gilgan Centre for Research and Learning

686 Bay Street

Toronto, ON M5G 0A4

Canada

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The Retinoblastoma Research Symposium brings together retinoblastoma patients, survivors, family and friends of those diagnosed with retinoblastoma, health professionals and researchers.

The symposium is comprised of the following events:

1. Retinoblastoma Family Gathering: a unique opportunity for knowledge dissemination and exchange. Families affected by retinoblastoma will be invited to attend panel sessions by retinoblastoma experts (i.e. patients, researchers and health professionals). There will be a marketplace to allow various organizations to showcase the full range of supports and services available to retinoblastoma families.

2. Annual Canadian Retinoblastoma Research Advisory Board Meeting: the Canadian Retinoblastoma Research Advisory Board (CRRAB) was created to sustain patient engagement in retinoblastoma research. CRRAB includes patients, family members, researchers, and health professionals. Existing CRRAB members, and the broader retinoblastoma community, are encouraged to attend this meeting to learn more about the CRRAB and influence the direction of CRRAB for 2020.

3. Retinoblastoma Research Workshop: participants will be divided into the following breakout sessions.

Session #1: Early Diagnosis

In 2017 patients, researchers and health professionals jointly agreed that the top retinoblastoma research priority was, “How to increase early diagnosis of retinoblastoma (i.e., decrease age or stage at diagnosis)?". In order to conduct research that will address this important question, funding application and a research protocol are required. The main goal of this session will be to establish a process for developing funding application and a research protocol in 2020. We will also participate in discussion and brainstorming activities about the study design.

Session #2: Pathway of Care

Retinoblastoma research priority # 9 is, "How to provide a detailed pathway of care or plan, outlining treatment and follow-up, to retinoblastoma patients and families?". The main goal of this session will be to develop a prototype of a patient-centered pathway of care. The prototype will be an illustrative treatment map, based on the Get Well Maps concept, a form of child-centered medical communication. Children may participate in this session with their parents.

Session #3: Foundations in Patient Oriented Research

The main goal of this session is for participants (including researchers and health professionals) to learn the basic skills and knowledge needed for patients to partner in research.

4. Child Life Directed Children’s Program: coinciding with the family gathering, CRRAB meeting and research workshop, the program will include art activities that focus on eyes, sensory play and medical play. Snack and meals provided.

For a detailed agenda, please click here.


Additional Information

Please watch this page for information about the symposium.

Travel Stipends: a limited number of modest travel stipends are available for patients/survivors/families who live outside the Greater Toronto Area but are Canadian residents. If this applies to you, please request a travel stipend during the registration process and we will get back to you. Families with more than one attendee are eligible for multiple stipends. (Note, this does not guarantee a stipend, we will consider all requests and respond by email.)

Meeting Venue and Parking: The meeting will be held in the state-of-the-art Peter Gilgan Centre for Research and Learning, located at 686 Bay Street. Parking is available on Elm St. between University Ave. and Elizabeth St.

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Date and Time

Location

Peter Gilgan Centre for Research and Learning

686 Bay Street

Toronto, ON M5G 0A4

Canada

View Map

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