The Arthritis Research Campaign Clinical Study

Group (CSG) for Inflammatory Arthritis

26/09/08: John D Isaacs, Professor of Clinical Rheumatology, Newcastle University (Foreword by Mark Liddell, NRAS Trustee)

Taken from NRAS magazine, Autumn 2008

"Being asked by Professor Isaacs to be a patient representative on the arc Clinical Study Group (CSG) was a daunting prospect at first, as my knowledge of research into rheumatic diseases is obviously very limited.

However, I believe patients should be included in CSGs, as a patient perspective is necessary and therefore patient involvement is important.

I needn't have worried, as all the professional clinicians have been extremely kind, patient and supportive throughout.

It has been a fascinating experience to be involved in the CSG and the debate to decide a) which research questions should be asked and b) how best to try to find the answers.

One point I have raised and which has been put to arc, is that patients who participate in CSGs would greatly benefit from some form of training course. This would be of benefit to all concerned, as the patient representative would hopefully gain enough knowledge to make a worthwhile contribution and also the confidence to take part in the first place! I would encourage patients to participate in research studies, as we patients are the ultimate beneficiaries - the more research, the better the future for everybody who has this wretched disease.''

Research involving patients leads to better treatments and improved assessment tools. The NHS provides an optimal environment for such research but the UK has not, of late, been at the forefront of advances.

A recent reorganisation of research funding by the Department of Health (DoH) addresses this situation. There are several new funding streams for clinical research and greater transparency over their use. To maximise the benefits for the musculoskeletal community, the Arthritis Research Campaign (arc) has developed a number of Clinical Study Groups (CSGs). Their primary function is to commission and nurture high quality research into rheumatic diseases

(http://www.arc-research.org.uk/med_director/clintrialsinit.asp). arc has invested £25,000,000 into this initiative which, as well as funding original research itself, will help individuals and groups to apply to other funding bodies such as the DoH’s National Institute of Health Research.

What does this mean for you as a patient?

The adult inflammatory arthritis CSG was formed in late 2007 and is currently developing its 5 year strategy. We aim to commission research that addresses the most important questions for patients with inflammatory arthritis. For example, a recent meeting addressed the question “What is the optimal treatment for the patient who has failed their first anti-TNF drug?” We have also hosted a meeting around the management of early arthritis and are planning meetings focussed on remission induction, and allied health professional (AHP) research. These meetings provide an opportunity for rheumatologists from around the UK to debate and determine the key research questions and the best strategies to address them.

Is this a good investment?

Cancer doctors have embraced an equivalent strategy over the past 20 years. During this time the management of many cancers has improved considerably as a consequence of collaborative, multi-centre research networks. In general, being involved in research studies has led to better outcomes for patients. We are, therefore keen to relay this message to patients with inflammatory arthritis. Whether you have early or advanced disease, try to familiarise yourself with current research programmes and ask your doctor or nurse how you can become involved. DoH now provides transparent funding for, amongst other things, research sessions for health professionals in all environments – so you don’t need to attend a teaching hospital to participate.

Conclusion

Recent changes in research funding have led to the development of nation-wide research networks, identifying and addressing the most important questions for patient care. Patients should benefit by participating in the ensuing research studies and we encourage all patients to be proactive and to request involvement.