How research at the Centre for Epidemiology has improved the lives of people with arthritis
16 June 2023
We’ve invested an incredible £4.5mn in the Centre for Epidemiology over the past decade – and it’s had an amazing impact, touching the lives of people with arthritis right across the continent.
Now, we want to explore its ground-breaking research, how it’s supporting the next generation of researchers, and how it’s impacting people like you living with arthritis.
What is epidemiology?
First things first, what exactly is epidemiology? Epidemiology is simply about studying large groups of people so we can discover:
- what causes a disease
- who is most at risk of developing disease
- how well treatments work
- what the consequences of disease can be.
Just ten years ago, it was unclear how many people in the UK had arthritis, why some people were more severely affected, and what the future held for people with arthritis who were receiving treatments.
Now, thanks to epidemiology research, we have a clearer picture – but there’s still more work to do.
What is the Centre for Epidemiology? How is Versus Arthritis involved?
We know just how life-changing epidemiology research can be.
So, back in 1954, we gave funding to the University of Manchester so they could open an Epidemiology Research Unit.
This later enabled Dr Jonas Henrik Kellgren to become England's first ever Professor of Rheumatology.
Fast-forward to 2013, and the Centre for Epidemiology was founded at the University of Manchester, with the support of the University of East Anglia (UEA).
What has the Centre discovered? How has it helped people with arthritis?
Since it opened its doors, we’ve invested an incredible £4.5m in the Centre’s ground-breaking research. So, what have we discovered?
How many people in the UK have arthritis and other musculoskeletal (MSK) conditions
From producing new estimates of how many people in the UK live with psoriatic arthritis, fibromyalgia and juvenile idiopathic arthritis, to discovering the declining rate of Paget's disease, the Centre is spearheading our knowledge on how many people have musculoskeletal conditions.
How effective and safe treatments are for arthritis and other MSK conditions
The Centre for Epidemiology has weighed up the risks and benefits of drug therapies such as biologics, methotrexate, opioids, and steroids, as well as non-drug therapies such as knee braces.
For example, they showed that a moderate consumption of alcohol doesn't have a negative effect on medication for those taking methotrexate. This is now included in international recommendations. This finding has allowed thousands of people taking methotrexate to enjoy a drink without having to worry about their medication.
How do arthritis and other MSK conditions progress over time
‘Why me?, ‘Am I the only one?,’ ‘What treatment is out there?,’ ‘Will it work?,’ ‘What are the side effects?'
These are just a few of the questions you might have asked yourself if you’ve been diagnosed with arthritis.
To answer these questions, we need lots of long-term, real-world data. One way we can get this rich kind of data is through cohorts and registers.
A cohort is a group of people who agree to take part in a study for a long period of time. As part of the research, we regularly check in on them, which means we can see how a condition affects them over time.
A register is slightly different. It’s a collection of willing patients who donate clinical data (such as blood samples and hospital records) over a period of time. In the long-term, this allows us to see how a condition progresses and how treatment affects them.
The Centre of Epidemiology has many amazing cohorts and registers, whose data has led to some incredible breakthroughs. Four of the most highly regarded are the:
- Norfolk Arthritis Register (NOAR)
- Childhood Arthritis Prospective Study (CAPS)
- British Society for Rheumatology Biologics Register for Rheumatoid Arthritis (BSRBR-RA)
- UK JIA Biologics Registers
What are the key discoveries?
Using this real-life data, we’ve discovered:
- A higher intake of fruit and vegetables reduces the risk of rheumatoid arthritis.
- Over 90 genes are linked to developing rheumatoid arthritis.
- 14 genes are linked to developing juvenile idiopathic arthritis, and several genes are linked to higher levels of disability.
- Biologic therapies are extremely effective, and their benefits outweigh the cost for most patients.
- Successful remission is possible for young people with juvenile idiopathic (JIA) arthritis. One in five children with JIA are in remission after receiving biologic therapy for two years.
- Tofacitinib, a treatment for rheumatoid arthritis and psoriatic arthritis, is now licensed and used by over 300,000 adult patients across Europe. Without register data, tofacitinib might not have been approved by regulators.
The registers and cohorts at the Centre for Epidemiology are an invaluable source of information.
So far, they've given researchers the data they need to predict who is most at risk of developing more severe forms of arthritis, as well as those most at risk of medication side effects. This allows us to potentially prevent these scenarios.
Over time, they’ll generate even more ground-breaking insights into how arthritis can best be treated. Plus, in the future, they could help us develop more life-changing drug treatments.
How does the Centre involve patients?
How can we make sure that research has the biggest impact? One of the best ways is to get people with arthritis involved in research right from the beginning.
The Centre for Epidemiology has worked hard to make sure that it carries out research ‘with’ or ‘by’ patients who have arthritis. This is sometimes called patient and public involvement (PPI).
Here are just a few ways they’ve involved people with arthritis in their work:
Juvenile onset rheumatic diseases: education, vocational readiness, and employment
Young people are often told that they’re ‘too young’ to have arthritis. But we know that it can affect anyone, at any age.
At the Centre of Epidemiology, Professor Suzan Verstappen is exploring how juvenile onset rheumatic and musculoskeletal diseases may impact the education, career choices, aspirations, employment prospects and well-being of teenagers and young adults.
She wanted to get young people involved right from the start. So, she spoke to members of a national youth advisory group, called YourRheum. These young people decided which research questions were important to answer and how they would like to be involved in the project. For example, they wanted to help write the funding application.
Manchester Digital Pain Manikin
This important project has two aims: first it wants to better understand why people from ethnic minority groups more commonly report pain. Secondly, it wants to develop a smartphone app to help people report their pain accurately.
People with arthritis who come from ethnically diverse backgrounds played a vital role in this research. They tested the app, provided their feedback, and ultimately found the app helpful. This proved that the tool is helpful for everybody to report pain, regardless of their cultural background.
How does the Centre help researchers’ career development?
If we want to make new discoveries and solutions to help people like you living with arthritis, we need highly skilled researchers to lead the way.
That’s why the Centre of Epidemiology has worked hard to nurture a strong, knowledgeable, and collaborative research community.
It does this in lots of ways. The Centre hosts a yearly Research Showcase where staff can network, get career advice, and share knowledge. Plus, it also hosts a three-day course covering vital topics by epidemiology researchers from across the globe.
By encouraging great minds to carry out musculoskeletal epidemiology research, we have a greater chance of more breakthrough discoveries in the future.