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Notes to the editor

These notes are deisgned to give you a brief overview of retinoblastoma and related statistics. For further information of the charity visit our About us section.

1. Retinoblastoma (Rb) is a rare form of cancer which affects the retina of children, predominantly under the age of five years.

2. Statistically it affects 1:20,000 live births each year. This can also be expressed as between 40 and 50 cases a year or about one child a week in the UK. It represents 3% of childhood cancers in the UK.

3. Retinoblastoma affects children from all races and occurs in both genders equally.

4. In the UK more than 98% of children treated for retinoblastoma survive*, and the majority will not have any recurrence of the retinoblastoma.  Retinoblastoma has one of the best cure rates of all the cancers which develop in children.

Due to a lack of awareness of eye cancer, late diagnosis and poor access to treatment, children in developing countries are often diagnosed at an advanced stage so the disease can be fatal.

5. In about 45% of cases, the condition is heritable (with 55% non-heritable). A person who has had this form of Rb has a 50% chance of passing it on. The retinoblastoma gene (RB1) was the first heritable cancer gene to be identified.

6. Rb can affect one eye (unilateral) or both eyes (bilateral) and there can be anything from one tumour in one eye to multiple tumours in both.

7. About 70% of unilateral Rb patients will require enucleation (surgical removal of the eye).

8. The signs of Rb include: the appearance of a whitish light bouncing back out of the eye, like a "cat's eye" caught in the light. It is often noticed in photographs where flash photography has been used. One eye will appear red, the other white. (note: there can be other reasons why this reflex occurs but it is ALWAYS best to get it checked out). A squint is sometimes present; the eye can look sore or swollen; there can be a change in the colour of the iris, a deterioration in vision or the absence of red eye in a photograph in one pupil.

9. Children who have the heritable form of Rb have a higher risk of developing other cancers later in life.

10. There are two specialist NHS treatment centres in the UK, The Royal London Hospital and Birmingham Children's Hospital. The service is overseen by the NHS National Specialised Commissioning Team.

11. Initial diagnosis can be made by examination using an ophthalmoscope but full diagnosis can only be confirmed by a specialist during an examination under anaesthetic (EUA).

*The survival figure is based on the number of children surviving for five years after treatment – A benchmark figure for health statistics.