Tocilizumab (APTITUDE) Trial

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What is Tocilizumab?

Tocilizumab is a type of drug that is called a biological therapy. It is usually used for treating rheumatoid arthritis. In this trial Tocilizumab will be given in the form of a subcutaneous injection.

Why is there a trial?

Unfortunately some children with JIA-Uveitis do not get better when treated with standard treatment of Methotrexate. There are indications that Tocilizumab may work in treating children with JIA-Uveitis, to find out if this does work there needs to be a project called a clinical trial. This trial will see if there is evidence to show if Tocilizumab does work

When does the trial start?

The trial is due to start in November 2015

Which Hospitals are taking part?

Alder Hey Children’s Hospital, Bristol Royal Hospital for Children, Great North Children’s Hospital, Great Ormond Street Hospital, Sheffield Children’s Hospital, Southampton Children’s Hospital.

What if my Hospital is not listed?

Your child’s consultant will decide whether or not your child should be transferred to a participating hospital to take part in the trial.

Who has organised the trial?

University Hospitals Bristol NHS Foundation Trust has sponsored the study.
It is funded by Arthritis Research UK.
The day-to-day organization is coordinated by the Clinical Trials Research Centre (CTRC) in Liverpool.

What role does Olivia’s Vision play?

Olivia’s Vision (OV) is a charity which was founded to support uveitis patients and their families.

OV was asked by (CTRC) to provide support and information to both the children and their parents considering taking part in the trial.

We will continue to provide that assistance throughout the trial and when the trial is finished.

Olivia’s Vision is an independent charity, which can therefore give impartial and confidential advice.

Everyone affected by uveitis, children and adults, is free to use our Forum

Who can take part?

Any UK resident child aged between 2-18 years with persistently active JIA associated uveitis can be asked to participate.

How many children will take part?

A total of 22 participants will take part in the trial.

Does my child have to take part?

No. Participation is voluntary.

What other information will I be given?

As the parents or guardian you will receive information sheets detailing the trial and what is involved for your child.

Your child (age dependent) will also be given information to ensure that they understand what will be happening, and that they are happy to take part.

If you do not understand the information, or you have any questions or concerns, you should speak to your GP, consultant or Olivia’s Vision.

How long does the trial last?

Each participant will take part in the trial for a maximum of 9 months.

What will happen before the trial starts?

After your child’s specialist has asked whether you would like your child to take part in the trial, you will be given some information sheets.

Once you have had an opportunity to discuss the trial, and all of your questions and concerns have been addressed, you will be asked to sign a consent form.

If your child is over the age of 6 s/he will be asked to sign an assent form.

Your child will then have some tests, known as screening to see if they qualify to be on the study.  This is to ensure that the study is as safe as possible for your child.

What tests will be performed before the trial?

  • Your child will have a full physical and eye exam.
  • You and your child will be asked about their medical history.
  • Blood pressure, pulse, temperature, height and weight will be noted.
  • A skin test will take place to screen your child for tuberculosis.
  • A blood test will be done.
  • Urine will be taken.
  • A puberty-stage assessment will be carried out to assess and monitor your child’s physical development. The parent will carry this out.
  • If your daughter has had her first menstrual period, she will have a pregnancy test at the screening visit and at months 3, 6, 9, 12, 15, 18 and 21 covering the time during the Trial and for three months after the Trial.

What tests will be done during and after the trial?

Throughout the trial your child will be asked to visit the clinic regularly to have their blood pressure, blood, urine and vision tested.

Your child will have their general health assessed, and you and your child will be asked to keep a diary and to fill in some questionnaires to describe how you are all feeling.

When the study has stopped after 6 months, your child will continue to be seen and assessed after 3 months.

Does every child receive Tocilizumab

Yes, everyone will be given Tocilizuab

What if my child’s Uveitis gets worse

They can be removed from the trial and alternative treatment discussed with you according to best practice at their hospital.

What if I change my mind about my child taking part?

You are free for your child to leave the trial at ANY time.  It is perfectly normal to have second thoughts, and if you need to talk about your concerns please contact Olivia’s Vision, your GP or consultant.

What if my child becomes Ill during the trial?

If your child becomes ill s/he should be seen by a doctor, and the study doctor or member of the study team should be informed as soon as possible.

Who do I contact if I have a problem?

You should contact your doctor if there are any problems at all. You will be given a card with details of the study, and emergency contact numbers which you will be asked to carry with you at all times. Should your child have to visit a different doctor tell them your child is taking part in this Trial, and that the study doctor should be contacted.

You can also contact Olivia’s Vision <>  if you need further assistance.

Will I receive payment?


However, if you and your child have to make extra study visits, or go to a hospital further away from the one you would normally go, then reasonable travel expenses can be reimbursed on production of valid receipts.

Team Harrison and the Nuts Challenge

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Young Harrison Lloyd has been battling uveitis for several years. Earlier this year, his family and friends set up Team Harrison and began fund raising for Olivia’s Vision. The team have now raised over £4,000.

Olivia’s Vision is once more humbled and grateful that a family, and their friends, living through the distress of this disease can throw themselves into such exuberant, muddy fund raising and donate a fantastic sum as a result.

Tanya Lloyd says,

“We started Team Harrison because we wanted to feel useful and to help OV. OV has supported us tremendously over the last few years as Harrison battles uveitis. We wanted to emulate the challenges he faces and overcomes every day.

We have raised over £4K now and know that every penny will be used by OV in supporting children and adults with this awful disease and we are so proud of OV in their challenging of NHS England’s decision to refuse funding for Humira and Remicade.”

Great North Run – 13th September 2015

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Kristina Bradley, whose sister has been having a terrible time with uveitis, completed the Great North Run for Olivia’s Vision in a time of 2 hours and 41minutes.

Kristina raised approximately £1,500 and Olivia’s Vision is very grateful – the Medical Advisory Panel is being kept busy spending the funds raised! Kristina says;

I’m really proud of myself for completing the GNR and it was an honour to do this run on behalf of Olivia’s Vision to raise awareness and funds for such a worthy charity.


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Before her husband, Derek, passed away last year, Jane Hunt promised him she would hold a fund raising day to support the charities that helped him most throughout his horrible illnesses – Olivia’s Vision and Queenscourt Hospice.

On the 5th September, Jane’s MEGGA DEGGA day raised £800 for Olivia’s Vision. Even when he was seriously ill, Derek remained a larger than life character, still living up to his Megga Degga nickname and it was impossible to talk with him without feeling inspired and uplifted.

Olivia’s Vision is very grateful to Jane for her fund raising, but also feels privileged to have known Derek and to have the warmth of this remarkable,inspirational couple extended to us. May Derek forever smile upon you, Jane.

Petition against funding withdrawal

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NHS England has withdrawn the funding for the two main drugs which help prevent blindness.

Please sign this petition, and share the link, to help reverse their policy.

Access to Humira and Infliximab

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The result of our meeting with NHS England on 8th September.

In July, Olivia’s Vision revealed that “The Adult and Paediatric Anti -TNF policies for Severe Refractory Uveitis” had not been approved for specialised commissioning.

Meaning that those with idiopathic uveitis, applying for Humira or Infliximab after 2nd July, were to be refused the drugs.

Olivia’s Vision has now met with NHS England to stress how detrimental this decision is to patients. It has been agreed that the clinical evidence from the adult VISUAL Humira trial, and the paediatric SYCAMORE Humira trial can be resubmitted, together with further evidence that NHS England has requested.

It is hoped that all of this information will be ready to be submitted in October 2015. The evidence will then be reviewed by NHS England in November. We have NOT been given a timeframe for the decision making process, but in the meeting it was suggested that it could, NOT WILL, be completed within three months.

If the further evidence is accepted, the policy denying access to Humira could then be approved in this financial year (2015-16), meaning that new applications for Humira would then be accepted.


Everybody already being prescribed Humira or Infliximab, will continue to have access to these drugs.

The current policy denying Humira and Infliximab, only applies to patients with idiopathic uveitis, that is: cause unknown.

The current policy does NOT apply if the uveitis patient has a secondary disease eg if a child is diagnosed with JIA and uveitis, the child can still be prescribed Humira or Infliximab.

The policy only applies to uveitis patients in England.

The Individual Funding Request (IFR) route is still available for patients who are significantly different from other patients with uveitis. BUT blinding disease alone will not make a patient eligible for an IFR. In reality this means a request for individual funding will be unsuccessful.

The clinically critically urgent (CCU) process remains open, but the criteria is usually based on having a life threatening disease, and so again, this process is unlikely to be successful for now.