Low key but high impact
Reproduced from Issue 109 of Arthritis Today
Pictured left to right, front row, are NOAR staff Joan Barnard, Linda Galpin, Jacqueline Chipping, and Sue Irvine, and, back row, Diane Bunn, Bett Barrett, Sue Whiting and Teresa Kempson.
A look at the work of the Norfolk Arthritis Register, which celebrates its 10th anniversary this year.
For more than a decade, the Norfolk Arthritis Register has been quietly and without fuss, getting on with its work.
Epidemiology has never been a headline-grabbing part of research but its importance should never be under-estimated. Without the painstaking collection and assessment of data collected in Norfolk, many research breakthroughs would never be made.
Research, using the data base, is able to identify how arthritis develops in certain groups of people – giving a more accurate prognosis, and helping doctors identify those most at risk. It also helps to justify the business case for treatment when it comes to health authority spending priorities.
NOAR's findings over ten years have been deeply significant – notably in identifying that smoking, obesity, immunisation, and blood transfusions are all risk factors in developing inflammatory arthritis – as well as genetic factors.
When it was set up ten years ago, NOAR was the first international attempt to study inflammatory joint disease in the population as a whole – not simply patients attending rheumatology clinics.
That means all those people on the register – now standing at 3,200 – have been monitored, tracked and assessed from the very start of their disease, instead of several months after their condition was first diagnosed – which makes a crucial difference in the recording of disease development.
Norfolk was chosen because of its relatively stable population, and patients are referred by the 273 GPs working in the 78 practices throughout the county.
The statistics provided by ongoing patient involvement has been used on numerous occasions by researchers involved in studies of the epidemiology of rheumatic diseases – that is, to measuring the occurrence of disease to identify risk factors and assess the disease outcome, and its impact on the community.
"I think over the past ten years, the work that has been done in identifying risk factors has been of great importance," says Dr Deborah Symmons director of NOAR, who is based in arc's Epidemiology Unit in Manchester.
Of the risk factors identified by NOAR, many are startling. People undergoing blood transfusions are at risk of developing inflammatory arthritis. Likewise, a small number of adults who are vaccinated – particularly for flu or tetanus – can be at risk. And people who are obese – that is significantly overweight – and smokers are also more at risk than those who are the correct weight, and don't smoke.
Ongoing studies are continuing to examine other important risk factors with particular emphasis on diet, occupation and other exposures that might explain disease occurrence.
Another project is to look at the cost of rheumatoid arthritis – both to the health service and the individual. The team is investigating the cost of hospital trips, over-the counter drugs, complementary therapies, adaptations to houses, and having to give up work.
Another important finding is that genetic markers within the HLA region (an important genetic area which predisposes some people to developing RA) are much less strongly associated with the development of disease in the general population than in hospital patients with RA. This means that genetic factors are more important in relation to the development of severe disease rather than milder cases of inflammatory arthritis.
The small NOAR team of five part-time research nurses and two administrative staff is led by Clinical Manager Bett Barrett, who has been with the team since the beginning, and has seen NOAR through its development and growth.
"Of course, the most important individuals are the patients themselves who give unstintingly year after year, to add to the body of knowledge about inflammatory arthritis," said Bett. "Without their willingness to co-operate, progress would be severely limited."
