1. Early Diagnosis – RB Canada Research

Detection: Early Diagnosis

How to increase early diagnosis of retinoblastoma
i.e., decrease age or stage at diagnosis?

The average age for retinoblastoma diagnosis in Canada is 27 months for unilateral patients, and 15 months for bilateral patients. This is significantly earlier than the average age at diagnosis for children who live in developing countries. Yet, Canadian families have indicated they wish to diagnose kids earlier, to facilitate good quality vision and eliminate the need for more intensive therapies.

Early diagnosis is possible for families with a known history of retinoblastoma. For these families, genetic testing can be used to predict tumors before they form in the eyes of an infant. Tumors can be detected very early while they are small, treatable with focal therapy, and pose minimal threat to vision.

For most children with retinoblastoma, they will be the first child in their family to be diagnosed. Thus, it is important for the public and the medical community to recognize the common first signs of retinoblastoma, leukocoria (white eye reflex) and squint, and consult with an eye doctor immediately.

Why Is This One of the Top 10 Retinoblastoma Research Priorities?

Earlier diagnosis of retinoblastoma will lead to better outcomes and require less intensive treatment.

Personal Story

We discovered our child’s retinoblastoma through the use of flash photography. This form of discovery isn’t always true for everyone. Although it is suggested that eye exams can happen as early as 6 months of age, they are not enforced… We need research to help us understand the gaps in our healthcare system to address consistency across the board which can then allow families and invested people to lobby for change. We all deserve the best optimal care.
RB Parent

Progress Towards This Priority

Ongoing Research

Researcher	Title
B. Shaw	Detection of leukocoria using a soft fusion of expert classifiers under non-clinical settings

Completed Research

Researcher	Title
C. Campolina de Sá Mattosinho	Prediagnostic Intervals in Retinoblastoma: Experience at an Oncology Center in Brazil
L. Desjardins	Supporting early diagnosis, treatments and the rehabilitation of children with retinoblastoma in sub-Saharan African countries
B. Devarajan	Smartphone-based application improves the detection of retinoblastoma
S. Epelman	National Campaign for early diagnosis of retinoblastoma in Brazil
L. Fu	Impact of an education program on late diagnosis of retinoblastoma in Honduras
P. Gargallo	Retinoblastoma: towards an earlier diagnosis
A. Reddy	Lag time for retinoblastoma in the UK revisited: a retrospective analysis
C. Rodriguez-Galindo	Retinoblastoma: One World, One Vision
S. Staffieri	Crowd-sourced Ontology for Photoleukocoria: Identifying Common Internet Search Terms for a Potentially Important Pediatric Ophthalmic Sign
F. Traore	Retinoblastoma: inventory in Mali and program to develop early diagnosis, treatments and rehabilitation

Patient Engagement Level For This Priority

Patient Engagement Legend

Limited or Unknown Engagement. For this priority, there is limited or no evidence that patients are meaningfully engaged in research.

Some Engagement. For this priority, there is evidence that patients are meaningfully engaged in some parts of research.

Full Engagement. For this priority, there is evidence that patients are meaningfully engaged in the full spectrum of research.

In order to promote patient engagement in retinoblastoma research, we have provided an estimate of the level of patient engagement for each of the Top 10 Priorities, based on what can be discerned from the published literature. This means we may have missed some research where patients are being meaningfully engaged, because it is not reported. If you think we’ve made an error, please let us know via email.