- For patients
- Retinoblastoma - research study
- What is retinoblastoma?
- FAQs for parents
- For clinicians
- Retinoblastoma Genetic Screening
TypeServices - Services
Welcome to the Barts Health Retinoblastoma Service. We are one of only two centres in the UK that screen for, diagnose and treat retinoblastoma.
Retinoblastoma is a rare condition that affects infants and young children. We aim to provide a multidisciplinary approach to the treatment of retinoblastoma. Our leading specialists are committed to patient-orientated care based on the best clinical evidence and over 25 years of experience.
We provide retinoblastoma services from:
- The Royal London Hospital
If your GP or local ophthalmologist feels that your child needs to be investigated for retinoblastoma, they will send an urgent referral to the retinoblastoma service at The Royal London.
All examinations under anaesthetic and treatments take place on Daycare Ward, 6th Floor of The Royal London.
If your child is having treatment that requires them to stay in hospital over night they will stay on an inpatient ward.
If you have an outpatient appointment this will take place in the Eye Clinic at the Royal London Hospital. The Eye Clinic is located on the 6th Floor in Clinic 2.
The Royal London Hospital
London, E1 1BB
Tel: 020 359 41419
The retinoblastoma service has an agreement with a local hotel for family accommodation on the night before admission. If you require accommodation speak to a member of the retinoblastoma team so they can arrange this for you.
If you have any concerns or questions during your child’s stay, the medical staff are happy to help. Even if we are busy, we will always try to make time to listen and give you the information you need.
The Trust offers many advice and support services for patients and visitors. aAsk a member of the team to find information on these services and how to access them, and also ways you can get involved to help make improvements.
There are several support groups for patients and parents of patients with retinoblastoma:
We have close links with The Childhood Eye Cancer Trust (CHECT) who have staff based at our hospital. They provide a support network and information for families who would like to know more about this rare condition.
There are also two north American based online forums for patients and families with retinoblastoma. Registration is required to access these pages. These can be found on the Association of Cancer online resources website.
Retinoblastoma - research study
Eloise Patterson Project – survey request
A Greendale Foundation and CHECT-funded research study is being undertaken by our Retinoblastoma Genetics Unit. We are asking for patients, and parents of children, affected by retinoblastoma to take part in a short survey about the research. This is to ensure appropriate patient and public engagement and consultation.
The survey gives you the chance to tell the researchers what you think about this study and the use of patient information where individual consent has not been possible.
The aim of the research
The Retinoblastoma Genetics Unit is planning a study using data from retinoblastoma (Rb) patients with heritable or genetic cancer (the type where other family members may be affected). Patients with this type of Rb have a small chance of developing other cancers.
This study wants to look at any links between the different types of genetic changes in Rb, and other kinds of cancer that can follow later. Do some types of change increase or decrease the chance of getting other cancers? We hope that this will give doctors more information when working out the chance of other cancers occurring. This could lead to earlier detection and treatment of these cancers.
To do this we need to use information about patients with Rb - such as name, birthdate, and NHS number. This will let us match information about a person’s Rb gene change to that on any later cancers that they may have had. The personal data will be used only for a short time; once the match is made then the personal data will be removed. It will then not be possible to identify the patients in the study. Ethical approval has been given for the use of personal identifiable data in this study, but because we will be using data going back over many years we cannot get individual consent from everyone whose data we wish to use.
The survey closed on 27 August 2018.
If you do not want your/your child's data to be used in this work then you can get in touch to let us know. Contact Zerrin Onadim (Head of Retinoblastoma Genetics Unit) on 020 3246 0265 / firstname.lastname@example.org.
Your details will not then be used for this work.
If you would like to talk to anyone about heritable Rb and / or second cancers, you can contact either Dr Elisabeth Rosser (020 7762 6856 / Elisabeth.Rosser@gosh.nhs.uk) or your support workers at the Childhood Eye Cancer Trust, either Lesley Geen (020 7377 5578 / email@example.com) or Julia Morris (0121 708 0583 / firstname.lastname@example.org).
What is retinoblastoma?
Retinoblastoma (Rb) is a malignant tumour, which develops in the cells of the retina – the light sensitive lining of the eye. About two thirds of children with retinoblastoma have only one eye affected (unilateral), and one third have both eyes affected (bilateral).
In very young children who are diagnosed with retinoblastoma in one eye, it is possible for a tumour to develop in the second eye several weeks or even months afterwards. The number of tumours found in the eye also varies; sometimes only one tumour develops at the back of the eye or there can be several tumours, and these may require more than one type of treatment. Retinoblastoma has one of the best cure rates of all children’s cancers, with more than 9 out of 10 children being successfully treated.
- How common is retinoblastoma?
- What causes retinoblastoma?
- Signs and symptoms of retinoblastoma
- Diagnosis and investigation
- Treatment of retinoblastoma
Retinoblastoma is one of the less common childhood cancers and accounts for only about three percent of all cancers under the age of 15. In the UK between 40 and 50 children develop retinoblastoma each year. The tumour usually develops before the age of five years and some children are born with retinoblastoma. Children with bilateral retinoblastoma tend to present during the first year of life, while the peak age of diagnosis for children with unilateral retinoblastoma is two and a half years. Only a small number of cases are diagnosed after the age of five years.
Retinoblastoma occurs in two forms: a genetic, inheritable form, and a non-genetic, non-inheritable form.
The most common signs of retinoblastoma is leukocoria.
Leukocoria is an abnormal appearance of the pupil which tends to reflect light as a white reflex (like a cat’s eye)
Squint is a condition where the eyes point in different directions. Although a squint can be normal in children, it is always worth having it checked to make sure.
Absence of a red reflex in flash photographs.
Swollen, red or sore eye that doesn’t have an infection.
A change in the colour of the iris.
The diagnosis of retinoblastoma is made by an eye specialist known as an ophthalmologist. The ophthalmologist will examine your child’s eyes under a general anaesthetic.
There are a number of different methods of treatment available and the decision as to which is the most suitable will be made by your child’s ophthalmologist, who will take into account the size, location and number of tumours within the eye/s and the also the potential to save vision.
FAQs for parents
If your child needs to come in for retinoblastoma screening a member of the team will contact you to arrange the admission of your child. For patients who have to travel to London it is possible for us to arrange accommodation for the night before your admission.
- Your child's first visit
- What is an examination under anaesthetic?
- Why does my child need to be asleep?
- Who will put my child to sleep?
- How will my child go to sleep?
- Can I go with my child to theatre?
- Will my child’s eye be covered after the examination?
- How soon can I see my child?
- How will I know the results of the examination?
- How long do we have to stay after an EUA?
The best way to investigate a child for retinoblastoma is to examine them under anaesthetic. For most children this will be done as a day case procedure and most children will not be required to stay overnight. All examinations under anaesthetic take place on a Wednesday on the Daycare Ward at The Royal London. You might be asked to bring your child in the day before their appointment to have a vision test.
You may be asked to attend a pre-admission appointment at the eye clinic on the Tuesday before your child is admitted.
Examination under anaesthetic (EUA) means that your child will be asleep whilst the ophthalmologist examines their eyes. It is necessary to put eye drops in your child’s eyes before the examination. This is done to dilate the pupil (make it bigger), which enables the eye to be examined.
The ophthalmologist needs to have a very good look at the back of your child’s eyes. When your child is fully asleep this is a straightforward procedure that will not cause them distress.
A specialist paediatric (children’s) anaesthetist will meet you and your child before the examination. They will ensure that your child is fit for a general anaesthetic and will also discuss any concerns you may have in relation to anaesthesia. The anaesthetist will allow you time to ask any questions before the procedure.
There are two ways that your child can go to sleep these are:
- by gas - your child will be given anaesthetic gas to breathe in using a mask. The mask will cover their mouth and nose.
- by injection - your child will have numbing cream (local anaesthetic cream) applied to the back of their hands. This will numb the skin and allow a needle to be inserted without the child feeling the sharpness of the needle. This will be used to inject a liquid that puts them to sleep.
Your child will go to sleep very quickly, whichever method is used.
One parent will be able to accompany your child into the anaesthetic room. This is the room where your child will go to sleep. Once your child is asleep you will be shown where to wait by your nurse.
No. Your child’s eyes may be slightly red from the examination but do not need to be covered.
After the examination, your child will go into the recovery area where a children’s recovery nurse will look after them until they wake up. One parent will be taken into the recovery room. Your child may still be drowsy or upset, but you will be able to hold and cuddle them straightaway. A nurse from the ward will soon bring you and your child back to their bed. When they are awake enough your child can have something to drink.
The ophthalmologist and paediatric oncologist (children’s cancer doctor) will speak to you once all of the children have had their examinations. They may show you photographs or diagrams of what was seen. Other members of the retinoblastoma team may also speak with you before your child is discharged.
Every child recovers differently. After having an EUA, the nurse looking after your child will want to make sure that they are awake and alert and that they have had something to drink without feeling sick. Your nurse will let you know when you can go home.
If you would like more information about your first visit to the Retinoblastoma Service contact a member of the team on 020 359 41419.
The earliest method of retinoblastoma detection is by red reflex assessment. To assist GPs and health visitors with this assessment we, along with The Childhood Eye Cancer Trust, have developed this guide.
Sit in front of the child and parent at about arm’s length. Set the ophthalmoscope to around +2 (green or black) and focus on the parent’s eyes to show that the test is non-invasive and recognition of the normal red reflex in that particular ethnic group. Then focus on the child’s face and encourage the child to look at the light. Focus on the red reflex within the pupil.
Please show these images to parents as they may have taken photographs demonstrating usual red reflexes.
Normal red reflex = no referral
Red reflex absent. Obvious +/-asymmetry = urgent
Unsure/difficult assessment = paediatric ophthalmology primary care clinic referral
Red reflex abnormal = urgent referral Red reflex abnormal.
Referring patients to the retinoblastoma service
All referrals should be made to either Mr. Reddy or Mr. Sagoo by fax on: 020 3594 3262.
Barts Health NHS Trust
The Royal London Hospital
The Retinoblastoma Service
Whitechapel, E1 1BB
Tel: 020 3594 1419
Retinoblastoma Genetic Screening
The Barts Health Retinoblastoma Genetic Screening Unit (RGSU) is one of only two genetics centres for retinoblastoma in the UK. We provide a genetics service for patients and their relatives, performing molecular tests for predisposition to retinoblastoma. We work closely with our colleagues in the Barts Health clinical service, which is a designated provider of retinoblastoma care in England and Wales.
This information is for healthcare professionals, offering details and guidance about the services of the Retinoblastoma Genetic Screening Unit. Our RGSU User Manual contains information needed for genetic counsellors and physicians to submit specimens to the Unit. Please complete an RGSU Request Form and ensure you have the parent/guardian's consent before making a request
The Unit participates in the external quality assessment scheme organised by the European Molecular Genetics Quality Network (EMQN), is CPA accredited (Clinical Pathology Accreditation (UK) Ltd), and is waiting for formal approval by UKAS (United Kingdom Accreditation Service). We are also a member of the UK Genetic Testing Network (UKGTN).
For further enquiries, please contact email@example.com.