I started my ST1 in a small district general hospital (DGH) in the East of England. I was interested in paediatric rheumatology, which is full of rare multisystemic diseases and wonderfully friendly consultants. Dr Nik Johnson, a general consultant paediatrician with an interest in rheumatology, got me to attend his rheumatology clinics, and follow interesting rheumatology cases on the ward.
One of the cases that we had was a little girl referred by orthopaedics. She had a few weeks of gradual onset pain starting out in her knee, then spread to both of her feet, together with fever and lethargy. Both the history and examination pointed to pain and swelling coming from the bones instead of the joints. We were not sure what was going on, so we phoned a friend – our regional rheumatologist, Dr Kate Armon. The little girl was later on diagnosed with CRMO (chronic recurrent multifocal osteomyelitis).
This was the first time I heard of this disease. I did some literature search and presented this case at our regional rheumatology meeting. Then Kate said to me "why don’t we do an audit on all our patients with CRMO in this region?" I took it on and presented the findings at the BSPAR (British Society for Paediatric and Adolescent Rheumatology) annual meeting.
In the process, I had a better understanding of the disease
In the process, I had a better understanding of the disease, and also realised that due to the rare nature of CRMO, there are some very basic questions that remain unanswered. For example, how common is CRMO? What does it usually look like? Are children looked after by rheumatologists, orthopaedic surgeons or even oncologists as sometimes it looks like cancer? How are children treated and what is the outcome? Do most of the children recover after a year or they are still suffering?
One day a perfect opportunity arose - Kate sent me an advert about the British Paediatric Surveillance Unit (BPSU) Sir Peter Tizard research bursary. This is the first time I had heard about the BPSU, which is a fabulous system that was set up to survey rare childhood diseases. Every month, the BPSU sends out an orange reporting card (now an electronic card through email) to all the paediatric consultants across the UK and the Republic of Ireland, and asks them among a list of rare conditions, have they seen any case of these diseases in the last month. If the doctor ticks yes for a particular condition e.g. CRMO, the BPSU will then pass on the doctor's contact details to the research group for that condition. The research group will then contact the reporting doctor and ask for more details on each case.
I went for the application and was very fortunate to be awarded the Tizard bursary to fund a BPSU study
With Kate's support and help, I went for the application and was very fortunate to be awarded the Tizard bursary to fund a BPSU study on CRMO. Although BPSU was set up for paediatric consultants, this is one of the opportunities that we can get involved as trainees. It not only gives me the grand title of ‘lead investigator’, but also allows me to walk through the whole process of setting up and running a research study – ethics application, grant application, setting up collaboration, patient and public involvement, communication with hospital/university R&D department, and administrative personnel recruitment and so on. Most importantly, this is an assisted process with generous help and support from the BPSU committee. As trainees, there are probably many opportunities that we could ‘get involved’ in research, but this is one of the unique opportunities that we could have our ‘own’ research study.
Our CRMO study went live last October, and I’m really excited as I might be able to answer some of the questions we didn’t know about CRMO and potentially help the children affected by it. I also joined the BPSU scientific committee with Sarah Clarke as the trainee representatives to make more trainees aware of the wonderful opportunities available at BPSU.
Personally, I find the whole journey an extremely valuable experience, and I would definitely encourage you, my fellow trainee, to take on this opportunity
Personally, I find the whole journey an extremely valuable experience, and I would definitely encourage you, my fellow trainee, to take on this opportunity if possible. If you would like to apply for the Tizard bursary, I think the three most important things that you would need are: a supportive mentor, a rare childhood disease/presentation that you are interested in, and most importantly a firm belief that good research will shine some new light to our medical knowledge and improve patients’ care.