"I am glad that taking part in a trial might help others on their own cancer journey.”
A trial looking at dancing eye syndrome in children (UMSCOM)
Please note - this trial is no longer recruiting patients. We hope to add results when they are available.
Cancer type:
Children's cancers
Neuroblastoma
Status:
Closed
Phase:
Other
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.
More about this trial
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
- How well this treatment plan for dancing eye syndrome works
- How many children with neuroblastoma have dancing eye syndrome and how it affects their treatment
- How dancing eye syndrome and its treatment affects
quality of life 
Who can enter
You may be able to join this trial if all of the following apply. You
- Have just recently been diagnosed with dancing eye syndrome
- Are between 6 months and 7 years old (up to your 8th birthday) at diagnosis
You cannot join this trial if any of these apply
- You have had (or need to have)
chemotherapy unless it is to treat neuroblastoma - You are on steroids for 2 weeks or more immediately before joining the trial
Trial design
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.
Hospital visits
You will see the doctor to have some tests before taking part in this trial. These tests include
- A physical examination
- Blood tests
- Urine test
- Lumbar puncture
- Chest X-ray
- MRI scan
- Ultrasound
- MIBG scan
During treatment you see the doctor
- Every 2 to 4 weeks for 8 weeks
- Then every 4 weeks for the rest of the 1st year
- After 15 months and 18 months
- After 2 years
- Then every year up to and including your 5th birthday
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.
Side effects
The most common side effects of dexamethasone include
- An increase in appetite and weight gain
- Changes in mood and behaviour
- Increase in blood pressure
- Limiting your growth
- Weaker bones
- Indigestion and heartburn (your doctor will give you medication to help with this)
- Increased risk of infection
The most common side effects of cyclophosphamide include
- A drop in blood cells causing an increased risk of infection, bruising, bleeding, tiredness and breathlessness
- Loss of appetite
- Feeling or being sick
- Hair loss
- Irritation of your bladder (to help prevent this you should drink more and your doctor may give you extra fluid, or a drug called Mesna, as a drip into a vein)
The most common side effects of rituximab include
- A drop in blood cells causing an increased risk of infection, bruising, bleeding, tiredness and breathlessness
- Skin rashes
- An allergic reaction causing flu like symptoms such as a fever, chills, a headache and feeling sick
We have more information about
Recruitment start:
Recruitment end:
How to join a clinical trial
Please note: In order to join a trial you will need to discuss it with your doctor, unless otherwise specified.
Please note - unless we state otherwise in the summary, you need to talk to your doctor about joining a trial.
Chief Investigator
Dr Ming Lim
Supported by
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
Last review date
CRUK internal database number:
12229
Please note - unless we state otherwise in the summary, you need to talk to your doctor about joining a trial.
Cara took part in a clinical trial
