
"I am glad that taking part in a trial might help others on their own cancer journey.”
Please note - this trial is no longer recruiting patients. We hope to add results when they are available.
This trial is to find out more about dancing eye syndrome and its treatment. It will include children who have neuroblastoma.
This trial is open to children between 6 months and 7 years old(up to 8th Birthday). We use the term ‘you’ in this summary, but of course if you are a parent, we are referring to your child.
Dancing eye syndrome (also called opsoclonus myoclonus syndrome) is a very rare condition. It causes jerky eye movements and jerky body movements in children. It is usually diagnosed in children in their second year of life. About half the children who have dancing eye syndrome also have a rare cancer called neuroblastoma.
In this trial, the researchers want to find out more about dancing eye syndrome and its treatment. They will use a treatment plan that experts across Europe agree offers the best outcome with the least risk. The treatment plan includes the drugs
They also want to set up a Europe wide database to collect more information about dancing eye syndrome.
The aims of the trial are to find out
You may be able to join this trial if all of the following apply. You
You cannot join this trial if any of these apply
The trial team need at least 15 children in the UK to join and 100 children in total across Europe. The trial is in 3 parts and the team would very much like you to take part in all 3. You can choose to join only 1 or 2 parts, if you prefer.
For the 1st part, the trial team will put your information into a European database for dancing eye syndrome. Any information put into the database will be anonymous. It will not be possible to identify you.
For the 2nd part, the trial team will ask for samples of your blood and the fluid from around your spine (). If you have neuroblastoma they will also ask for a sample of your cancer that was removed when you had surgery or a
. They will use these samples to find out more about dancing eye syndrome and how to treat it.
For the 3rd part, they will treat your dancing eye syndrome with the following treatment plan.
There are 3 steps to the treatment plan. How many steps you take part in depends on how well your condition responds to treatment.
Everyone will have dexamethasone. You have dexamethasone as a tablet or liquid twice a day for 3 days every 4 weeks. Everyone continues to have dexamethasone for 44 weeks.
If your condition hasn’t responded well enough after 12 weeks, you will also have cyclophosphamide. You have cyclophosphamide as a drip into a vein once every 4 weeks. You can have up to 6 treatments of cyclophosphamide.
If your condition hasn’t responded well after 3 treatments of cyclophosphamide, you stop having cyclophosphamide and have 2 treatments of rituximab. You have rituximab as a drip into a vein once a week for 2 weeks.
Two years after your diagnosis, you will have some tests to check your well being, understanding, behaviour and development. A qualified will do these. You will have the tests again near your 5th birthday. If you are 2 years of age or older when you are diagnosed, you will have these tests 2 years and 4 years after your diagnosis.
At each hospital visit during the study the doctor will ask your parent how your condition has been in the past 2 weeks.
You will see the doctor to have some tests before taking part in this trial. These tests include
During treatment you see the doctor
You will have another blood test after 4 weeks of treatment and 1 year on. If you need to have rituximab, you may have another lumbar puncture before starting this drug.
At the end of the trial your doctor will tell you how often they want to see you.
The most common side effects of dexamethasone include
The most common side effects of cyclophosphamide include
The most common side effects of rituximab include
We have more information about
Please note: In order to join a trial you will need to discuss it with your doctor, unless otherwise specified.
Dr Ming Lim
Dancing Eye Syndrome Support Trust
Great Ormond Street Hospital Children’s Charity
Institut Curie
Neuroblastoma Society
Oxford University Hospitals NHS Trust
Sparks
Freephone 0808 800 4040
"I am glad that taking part in a trial might help others on their own cancer journey.”