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Please consider participating in a brief online survey and sharing information about this project with others affected by retinoblastoma and your health professionals. SURVEY CLOSED NOVEMBER 12.
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Just over a year ago, that vigilance led me to follow up on what I thought may be a sports injury but turned out to be a secondary tumor. I was then treated for a soft tissue sarcoma that I learned to be one of the more common types of secondary tumor to develop in those with an RB mutation. I now found myself facing a cancer diagnosis as an adult, devoting a great deal of thought to making significant health care decisions for the first time.
It has been a happy coincidence to learn of the Canadian Retinoblastoma Research Advisory Board (CRRAB) and the study on setting RB research priorities led by Dr. Dimaras and her team. My recent diagnosis and treatment experience have led me to think about RB from a new perspective and, ultimately, to articulate what I consider to be RB research priorities.
The first issue that came up for me was a feeling of being among the fewest of the few. Struck twice by lightning, or doubly star-crossed, depending on how you look at it! RB is a relatively rare tumor, and the sarcoma that surfaced in my 30s is a subtype of another relatively rare tumor. For understandable reasons, much of the data on treating my secondary tumor comes from patients with the most common subtype. But what I began to appreciate is that just because something works for the majority of cases, doesn’t mean that it will work for all cases.
For this reason, I feel it should be a priority to track patients like myself, RB survivors, through adolescence and adulthood to gain more data on the types of tumors that can appear in those carrying an RB gene mutation. While not all RB survivors will develop secondary tumors, the only way to begin to piece together how one cancer predisposition links to another is to collect more data. With relatively few of us out there in the world, the more patients that participate in these types of studies the better. This type of research would also provide insight on causes of the relatively rare secondary tumors, and inform best treatment options for childhood cancer survivors.
A second question I had after diagnosis was whether I could share my tumor samples or other data about my pathology and treatment with a centralized data bank, so that cancer biologists could access the samples along with others from RB patients. I now know that a first step toward this goal is to join the Canadian Retinoblastoma Research Registry. Yet, I expect that determining how to best identify potentially useful samples, how to coordinate the preparation and transport of the tissue to a central sample bank, and how to organize access and distribution of the samples, could all be fruitful areas to explore.
I have no doubt that as I continue to move through my cycles of follow-up, I will have new unanswered questions. I’m really thrilled to participate in this research priority setting study for this reason, but also to hear the perspective of other RB patients and their families. I predict an offshoot of the efforts of the CRRAB, Dr. Dimaras, and her research group will be a stronger RB community, which I look forward to being a part of. If you are reading this and considering whether or how you could contribute, I urge you to join the Canadian Retinoblastoma Research Registry, participate in the Priority Setting Study and reach out to the RB Canada Research group via this site and join us!
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Watch Dr. Jesse Berry (Ocular Oncologist, Children’s Hospital Los Angeles) describe how a small amount of fluid from the front of the eye, called aqueous humor, may provide information about the genetic profile of retinoblastoma tumors.
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Building on the success of a national retinoblastoma patient engagement strategy, Dr. Helen Dimaras at SickKids is establishing a study that aims to determine the “Top 10” retinoblastoma research priorities.
This project will be led by a national multidisciplinary steering committee. Please consider joining the steering committee if you are:
Steering committee members are asked to participate in a monthly meeting (in person at SickKids or via video conference) on the second Tuesday of the month for 1 hour. The study is scheduled to be completed in December 2017.
If you are interested in joining our steering committee, or want more information, please email retinoblastoma.research@sickkids.ca. Otherwise, you will hear about other opportunities to be involved when the study formally opens up.
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By: We C Hope
One Retinoblastoma World is a global network with the bold idea that all children with RB can have equal opportunity to access optimal care. When diagnosed early and treated effectively, childhood eye cancer is curable. No child should die, or suffer avoidable blindness because of it.
Many challenges impede scientific research needed to develop evidence based care, but One Retinoblastoma World is breaking down those obstacles.
This year’s program evolved from 10 questions commonly asked by parents and survivors. Each question will be explored in depth through a combination of presentations, open floor discussion and small-group breakout sessions.
Providing educational and networking opportunities for all stakeholders, this working meeting will focus on building connections and collaborations to advance care for all children, survivors and families. Engaging clinicians, researchers, families and survivors together will create shared learning and novel partnerships.
World Eye Cancer Hope USA founding board member and One Retinoblastoma World conference chair Marissa Gonzalez is most excited about the Family Social Day.
“Bringing together parents, patients and survivors in person for the first time on a national and international scale in the USA will be an incredible opportunity for learning, bonding and in many cases healing from shared experiences. For some, it will be the first time they meet a fellow RB survivor – forging these new relationships and strengthening existing ones will be an incredible experience for all involved.” – Marissa Gonzalez
Lower registration fees are available for clinicians from Low and Lower-Middle Income Countries, and for parents and survivors, to enable vital inclusive global collaboration.
For further information about this year’s meeting, please visit the following pages.
Please join us in Washington D.C. this October. Be part of the best future we can create for all children, survivors and families affected by childhood eye cancer, and those who care for them.
2017 Meeting
Crystal City Marriott
Washington D.C., USA
(Arlington, VA)
Family Social Day: Monday October 9
Full Program: October 10 – 11