Celebrating 30 years of the Norfolk Arthritis Register (NOAR)

05 November 2019
A doctor in a hospital and a patient having their hand examined.

The Norfolk Arthritis Register (NOAR) is the largest community-based study in the world to look at the onset, development and long-term impact of inflammatory arthritis. The study has provided important data on potential risk factors and responses to treatment, revolutionising the way healthcare professionals treat rheumatoid arthritis.

Funded by Versus Arthritis, the study has taken place over the last 30 years with the prime objective of learning more about the natural history of inflammatory arthritis. This includes answering questions such as how many people develop inflammatory arthritis, what the risk factors are for the development and does it have any associated conditions.

More recently the aims of the study are focused on exploring the genetic basis of inflammatory arthritis, the risk of cardiovascular disease, and investigating the link between cognition and rheumatoid arthritis.

Why is this research important?

Over the last 30 years, over 4,000 people have taken part in study – some of whom have been involved for over 20 years. The patient participants have been assessed by nurses at regular intervals.

Having the ability to recall a large group of participants over a long period of time allows researchers to be better placed to investigate the overall impact of inflammatory arthritis. And determine closely linked risk factors such as smoking and the effect of environmental influences such as diet.

Having a better understanding of inflammatory arthritis is key to determining the causes of the condition and allows us to predict people who are most at risk.

It also guides clinicians in the development of better treatments and more effective treatment schedules that will improve the lives of hundreds of thousands of people living with inflammatory arthritis.

But why Norfolk?

As the name suggests, NOAR takes place in Norfolk and has involved residents who live with inflammatory arthritis.

Many have asked why Norfolk was chosen as the location for the study. Quite simply – Norfolk has big population with good links to GP practices, with the majority linking into the same hospital - Norfolk & Norwich University Hospital NHS Foundation Trust.

The population is quite stable with less people moving around, compared to other parts of the UK. This provides the researchers, who are based at the University of East Anglia, with a perfect population for this type of long-term research study.

What have we learnt from NOAR and how has this helped people with arthritis?

It is fair to say that the information from NOAR has helped to rewrite textbooks over the last 30 years. It has informed healthcare professionals on the management and treatment of rheumatoid arthritis. So far, the research gathered has told us:

  • How widespread inflammatory arthritis is
  • Factors that might be related to the onset of arthritis e.g. smoking
  • People’s responses to treatments
  • The long-term impact of the condition e.g. people with inflammatory arthritis are more at risk of developing heart disease.

Read more about about rheumatoid arthritis.

Helen, who lives and owns a pub in Norfolk with her partner, has been involved in the NOAR programme for several years.

She says: “I have found the support beneficial as I received answers to a lot of questions. Arthritis is one of those problems that can be very severe and debilitating one day and then almost not there on another.

Personally, I have days when I feel absolutely great and other days, particularly in the winter when it’s a little damp outside and when I feel almost immobile.The programme has certainly helped me to understand the fluctuating nature of my condition and how to manage the pain.”

What’s next?

It’s NOAR’s 30th Birthday this year and the researchers are holding a celebratory event at The Forum, Norwich on Wednesday 6 November.

The event, which is open to the public, will celebrate NOAR’s journey from its inception to the present day and highlight the incredible advances in medical treatments for inflammatory arthritis over the last years.

Throughout the day, people who took part in the study will share their unique stories and experiences with NOAR over the years. There will also be multiple interactive sessions a live virtual reality art performance.

For more information about the event.

Looking ahead, the researchers are now trying to see if they can predict which patients are at risk of developing heart disease and whether treatments can change this. They also want to understand how current treatments can improve disabilities.