Retinoblastoma is an aggressive eye cancer that develops in early infancy and childhood.

The incidence of retinoblastoma is constant worldwide at one case per 16,000 – 18,000 live births. This corresponds to about 8,000 new cases every year.

Often the first sign of retinoblastoma is a white pupil, similar to a cat's eye (also called "leukocoria"). The white pupil is often seen on flash photography or under dim lighting, when the pupil dilates naturally. Other signs of retinoblastoma may include an inward- or outward-turning eye (strabismus), or a swollen, bulging eye (proptosis). Urgent referral to an eye doctor is recommended for a child exhibiting these signs.

Retinoblastoma treatment is multidisciplinary, requiring management by a dedicated team with expertise in eyes, cancer, genetics, and nursing, among others. Treatment depends on the severity of disease at diagnosis, and may involve the use of several different techniques and methods. Guidelines for treatment of retinoblastoma have been published in Canada and Kenya. Guidelines for the management of retinoblastoma in countries with limited resources have also been developed.

Retinoblastoma can be cured if diagnosed early and the cancer is confined within the eye. However, potentially effective therapies are not accessed in many countries, because of poor retinoblastoma awareness, unaffordable costs (e.g., medicine or transport and accommodation), and lack of health care coordination. As a result, survival rates vary from country to country.

One Retinoblastoma World is a global network with the bold idea that all children with retinoblastoma can have equal opportunity to optimal retinoblastoma care. Through global collaboration and research, we will foster optimal, coordinated, evidence-based retinoblastoma care. We aim to make retinoblastoma a zero-death disease.

We welcome all feedback about the One Retinoblastoma World Map, including information about missing retinoblastoma treatment centers and genetic testing labs. To contribute information to the map, please see the section below called, "How do I add information to this map?"

Help Us Achieve Equal and Optimal Care for all Children with Retinoblastoma: Donate Now Website operating costs are funded by private donors. Your tax-deductible donation will help us sustain the One Retinoblastoma World Map.

The One Retinoblastoma World Map was created by Dr. Helen Dimaras (Director of Global Eye Health Research, The Hospital for Sick Children).

Donations from Canada can be made online to the SickKids Foundation or by calling +1-416-813-6166. Donations from outside of Canada can be coordinated by calling +1-416-813-1211. When processing donations please specify that funds are for Dr. Helen Dimaras' One Retinoblastoma World Map.

This map is a key initiative of One Retinoblastoma World. It aims to connect affected families to expert care; promote evidence-based retinoblastoma treatment; and facilitate enhanced collaboration among treatment centers.

1) Connect to expert care

Prompt referral and access to expert treatment is key for retinoblastoma survival. Visitors to the site can enter their coordinates and be directed to the nearest expert retinoblastoma treatment center.

2) Evidence-based treatment

Listing retinoblastoma capacity in a standard and transparent manner aims to promote adherence and adoption of a common standard of care. The data collected for each retinoblastoma treatment center and genetic testing labs represent the multidisciplinary resources and expertise recommended for optimal retinoblastoma care.

3) Enhanced collaboration

The map connects global caregivers to one another, sharing everything from basic contact details to available resources and personnel in individual treatment centers and genetic testing labs. This will facilitate referral of patients between sites, enhance knowledge exchange and potentially increase research capacity.

Here are some quick tips for navigating the map. Note that you must have the map in "focus" in order for these to work (if not in focus, clicking anywhere on the map will bring it into focus.)

Using the Mouse

Click and drag the mouse to pan, use mouse scroll wheel to zoom in and out, and double click to zoom in.

Hold the SHIFT key while dragging the mouse to zoom in to a selection, or hold the SHIFT key while clicking to center the map around that point.

Using the Keyboard

Use the arrow keys to pan, use the plus key (+) to zoom in, and use the minus key (-) to zoom out.

Using publicly available information, we identify and contact retinoblastoma specialists from around the world. The specialists are invited to answer questions about their treatment center or genetic testing lab and then this information is uploaded onto the map. Data are self-reported by specialists and have not been audited by the One Retinoblastoma World map team.

Each year, participating retinoblastoma treatment centers and genetic testing labs are invited to update their information, to ensure that the One Retinoblastoma World map is current.

The expected number of patients newly diagnosed with retinoblastoma annually per country is calculated by multiplying the global retinoblastoma incidence (1 in 16,000 live births per year1) by the forecast number of surviving infants (country population2 x (birth rate3/1000) x [1 - (infant mortality rate4/1000)]).

Sources
1Kivela, T. The epidemiological challenge of the most frequent eye cancer: retinoblastoma, an issue of birth and death. Br J Ophthalmol 93, 1129-31 (2009)
2Indicator: Population, total. 2015. World Bank
3Indicator: Birth rate, crude (per 1000 people) 2015. World Bank
4Indicator: Mortality rate, infant (per 1000 births). 2015. World Bank

If you have information you would like to submit about a treatment center, a genetic testing laboratory, or a story not currently represented on this map, please contact us.

We have a list of retinoblastoma treatment centers separate from this map where you can view the centers by country.