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Screening your child

Screening for retinoblastoma

In some cases the children and siblings of people affected by retinoblastoma could also develop retinoblastoma at a young age, for this reason they will be screened.

The need for screening will depend on what type of retinoblastoma the family member had and also the family member's genetic status if known.

Screening  for children under the age of five years old is usually done as an examination under anaesthetic (EUA).  A child needing this will be admitted to a day clinic at one of the two retinoblastoma treatment hospitals.  They will have an anaesthetic and the specialist doctors will check their eyes for any signs of retinoblastoma.  This is usually done regularly and then at increasing intervals until the child is 5 years old.  At this age the child may be continued to be monitored at regular intervals, but is seen by the specialists whilst awake.  Alternatively a child can be discharged at this age if it is felt the child is no longer at risk of developing retinoblastoma.   By closely monitoring children who have an increased risk of developing retinoblastoma in this way, any developing retinoblastoma tumours will be caught at very early stages and treatment can start immediately.

Babies are seen at closer intervals to start with because the retina develops at a fast speed when a child is young and slows down as the child gets a bit older.  When the retina is growing fast there is a higher chance a tumour could grow. As this growth slows down, so do the chances of a retinoblastoma tumour growing and therefore a child does not need to be examined as frequently.


Getting into screening

If you want to find out if screening is necessary for your child or children then you can contact either retinoblastoma service at the two treatment hospitals.

Birmingham Children's Hospital

The Royal London Hospital


If you think you fit into one of the statements below it is probably worth checking out if it is necessary for your children or child.

  • You or your partner had retinoblastoma as a child and are planning a pregnancy, are pregnant or have just had a baby. In these circumstances the specialist retinoblastoma team can put you in contact with a geneticist to help you learn about your genetic status if you haven't already done this and will also tell you what screening is necessary.


  • You or your partner had retinoblastoma as a child and you have children under 5 that have not been checked.


  • One of your children has been diagnosed with retinoblastoma and you are expecting another baby or have other children under 5 who have not been checked.


  • You have not had retinoblastoma but your sibling or parent had retinoblastoma and you have children under the age of 5 who have not been checked.  If you are in this group it is much
    less likely that your child/ren will need to be screened but you may like to discuss this with someone from the retinoblastoma team to find out.


(If a child who should be screened is not screened, that child risks developing tumours which potentially risk their sight and their life.)


Welcome to our section on the genetics of retinoblastoma.

About Genetics

Click here for an introduction to genetics and the Rb gene.

Genetic testing

How genetic testing can be useful and what tests can be done.

Genetic counselling

Click here to find out how genetic counselling can help you understand how retinoblastoma has affected you as an individual.

Planning a baby

An article on genetic counselling for anyone who has been affected by retinoblastoma and is planning to have a baby.

Second primary tumours

Information on possible long-term effects of retinoblastoma.

My Story

Moving accounts from relatives and individuals who have been affected by retinoblastoma, explaining how they coped and the effects Rb has had on their lives.