Inspiring Resilience - Empowering Lives

Research

Research into inflammatory arthritis (IA) has advanced significantly in the UK and globally. The introduction of biologic DMARDs in the late 1990s marked a major breakthrough, targeting specific parts of the immune system. More recently, JAK inhibitors have further expanded treatment options.

Alongside medical advances, care and management strategies have also evolved, emphasising movement over rest during flares to help maintain joint mobility and strength.

Despite this progress, many questions remain, such as why treatments work well for some but not others. Continued research is essential, and the voices of those with lived experience must be central to shaping the future of IA care.

This is where Public and Patient Involvement and Engagement (PPIE) plays a key role. PPIE means working with patients, carers, families, and the public as active partners in research, helping to shape priorities, improve relevance, and ensure that findings truly reflect real-life experiences.

One of our charity’s core aims is to promote best practice in PPIE and help ensure that research findings are accessible and relevant. Scroll down to find out how you can get involved, it’s not just clinical trials that can change lives.

Latest Research Opportunities

We are delighted to be working with researchers who are requiring the voices of those affected by inflammatory arthritis. 

Dr Polly Livermore and the Impact study are working on a chatbot to help support parents. This is great initiative and please do help if you can. 

Are you parent of a child or young person with a paediatric rheumatological condition? Do you often have questions you don’t have the answers to? Would you like to try out our new tech aide to bring you the answers you need from rheumatology professionals – day or night? If so, please visit www.theimpactstudy.co.uk and sign up to be first to try out our intervention. Any paediatric rheumatology condition, any age, any location in the UK. Hurry though, we are looking for users for the end of this month

Research findings

Here are a selection of published research papers from a variety of trusted sources:

UK Juvenile Idiopathic Arthritis Biologics register here

UK Rheumatoid Arthritis Biologics Register here

UK Psoriatic Arthritis Register here

UK Ankylosing Spondylitis Register here

Cluster Consortium Research Findings here

National Early Inflammatory Arthritis Audit here

Charity Collaboration the current mental health status of children and young people with JIA, and their wider family here

 

Your questions answered

Common questions

PPIE is the active involvement of patients, but also carers/families and members of the public, in shaping and being a part research. Examples could be: 

  • Helping decide which research questions should be asked
  • Designing study materials (.e.g consent forms, surveys), making sure they are relevant and accessible.
  • Being a member of research committees. 
  • Co-authoring publications.
 
The engagement part is the sharing information and knowledge about the research with the public, often to raise awareness, or disseminate results. Examples include: 
  • Public talks
  • Social media campaigns
  • Newsletters or website articles explaining research outcomes

It is vital that people with lived experience either as a patient or carer/family member are involved in research as it makes the research more relevant, improves recruitment and retention in studies, ensures that outcomes and the impact reflect real patient priorities and can build public trust in science and healthcare. You may be asked to take part in research studies when attending your appointments with your healthcare team i.e.

  • Consenting for your blood and/or synovial fluid to be used for medical studies
  • Be a part of new a clinical trial
  • Agree to be part of the national registered: RA, JIA and psoriatic arthritis registers.

There are many other ways you can be involved in research:

  • Complete surveys
  • Join patient engagement meetings with researchers to discuss research priorities, help meet the unmet needs
  • Help review patient materials to make sure they are accessible and relevant
  • Join an advisory board, provide feedback throughout a research project
  • Use/test digital platforms

Speak to your rheumatology team as they will be able to let you know what research studies are recruiting and whether you are eligible.

You can also see our above on this page for latest research opportunities 

Every research project follows its own protocol, but all must comply with GDPR and data protection regulations. If you have any questions, we encourage you to speak directly with the research team about how your personal information will be handled and kept safe.

We aim to support research that helps improve the lives of anyone of any age living with IA. If your project aligns with our vision and mission, please do get in touch, email info@inflammatoryarthritis.org 

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