A patient's perspective: OCTAVE study
OCTAVE is a research study aiming to find out how well children and young people who take certain medications respond to the COVID vaccine. This includes children and young people taking methotrexate or biologics for Juvenile Idiopathic Arthritis (JIA).
The study is open to take part in for children and young people aged 5-17 who attend Great Ormond Street Hospital (GOSH) who are taking certain medications for their JIA. You can find out more about the study here.
We know how important high quality research is for making advances in understanding and treating JIA. We partner with universities, research teams and clinicians all around the globe in helping to progress research.
Today, we thought it would be good to hear about what taking part in a research study is like from a patient’s point of view from 10 year old Trinity taking part in the OCTAVE study:
It was an early start as it can take a long time to get to Great Ormond Street for my appointments so I had to wake up at 5.30am and we set off at 6am to get there on time.
My appointment time for taking part in the OCTAVE study was at 9 O’clock and it was in the research centre at GOSH. It's in the main building, but separate from the normal outpatients. We had to ring the doorbell to be let in, and entered a really nice and light area - like a special outpatients department just for children taking part in research! Everyone was really welcoming and friendly, and all the staff were smiling the whole time. They made sure I knew what was happening and why.
I already had another appointment on the same day at the Sight and Sound centre at GOSH to have my eyes checked for uveitis. I had uveitis when I was younger when I was first diagnosed with JIA so it’s really important that I keep having my eyes checked every few months to make sure the uveitis hasn’t come back.
The OCTAVE appointment had been arranged for the same day so that I wouldn’t have to travel to GOSH for an extra journey (if anyone does need to attend on a non-clinic day, travel expenses will be reimbursed by the OCTAVE research team).
It was really cool to see a personalised welcome board which was a white board that had a checklist of everything written on it especially for me. It helped me know what was going to happen, as well as helping the research team make sure everything was done. They took my consent (making sure I was happy to take part - this is really important in research), then measured my height and weight whilst my Dad filled in the monitoring questionnaires (called a CHAQ) to help see how active my arthritis is. My consultant came down, too, to do a full check of all my joints. I felt really well looked after as they offered me drinks and biscuits.
They had arranged for my routine blood test that I have to have done anyway to monitor my JIA and side-effects from methotrexate to be done at the same time. So I only needed to have the blood test done once so I didn’t mind being part of the study as I need to have my usual blood tests done anyway.
I drank a hot chocolate and lots of water and squash on my journey to the hospital as I’ve found that helps my blood flow better for blood tests. I also now just ask for the cold spray rather than numbing cream as that also works better for me – otherwise my veins seem to like to hide away!
The blood sample then gets sent off to the lab where my normal blood tests are analysed and the sample of blood for the OCTAVE study gets analysed by another specialist team. They are looking to see how my immune system reacts to COVID before and after my vaccine, so they can see if my JIA or medicines make a difference.
After my bloods were taken, that was it. The whole thing took less than an hour, including the full assessment by my consultant.
A few days, later I was due to have my 3rd primary dose of COVID vaccine and so the OCTAVE team put a letter on the My GOSH app to confirm that is what I needed so that I could show my local vaccination centre. In case anyone is wondering, the COVID vaccine hardly hurts at all – Each time I have had the vaccination, I’ve not even noticed when the needle goes in so I always tell other children not to worry about the pain as it doesn’t hurt compared to my methotrexate injections for example.
I'll be going back to the research centre once more in a couple of months time for another blood test as they need to do two blood tests in total for the OCTAVE study. I know that by taking part, I’m helping other children with JIA as the results will help the researchers understand things better about COVID vaccines and JIA.
Information and forms about the OCTAVE study
A personalised whiteboard just for me! (not everyone will need all of these things on their list - it will be personalised to you)
The entrance to Great Ormond Street Hospital looking royal for the Queen's Jubilee