Diverse Minds, One Goal: The Power of Team Research in Systemic Sclerosis Diagnosis

In this case study, Professor of Rheumatology, Ariane Herrick, tells us about how their team of diverse backgrounds and expertise facilitated early diagnosis of the rare disease systemic sclerosis.

Can you tell us about your project in a nutshell?

The project, funded by the NIHR, aimed to simplify the early diagnosis of a rare disease: systemic sclerosis. Early diagnosis is crucial for timely treatment of painful finger and toe ulcers and potentially life-threatening internal organ issues. Most patients with Systemic Sclerosis experience painful finger discoloration when cold making early diagnosis possible. This is called Raynaud’s phenomenon. Looking at the person’s nailfolds (the area where the nail grows from the finger) using a technique called nailfold capillaroscopy helps differentiate between Systemic Sclerosis-related Raynaud’s and common Raynaud’s. However, most rheumatologists assessing Raynaud’s patients do not perform this test, leading to missed diagnostic opportunities.

The project’s main goal was to create a system that can capture high-quality nailfold capillaroscopy images using affordable handheld devices. These images would then be used to calculate a biomarker for capillary abnormalities.  The system would assist rheumatologists in image acquisition and image interpretation. This approach received strong support from Scleroderma and Raynaud’s UK (SRUK) because  it might improve patient experience and diagnosis times.

How were/are Team Research principles used in this project?

Successful delivery of the project was only possible through a team approach. The team met weekly throughout the project, and included individuals of very diverse backgrounds:

• Patients, who presented their views and perspectives, drawing from their own experiences and who were actively involved throughout the project from planning to successful completion.
• Scientists with expertise in computer science, imaging and physics. Their contribution was to develop the imaging system, apply it to different microscopes, and develop a robust biomarker for Systemic Sclerosis. 
• Clinicians, who recruited and supported participants, and provided context for ‘roll-out’ in the out-patient clinic.
• Vascular technicians, who acquired the capillaroscopy images. 
• Statisticians, who contributed to study design and performed statistical analysis.
• Health economists, who developed the first stage of a business model, to be further developed in the next stage of the research.  
• The project co-ordinator, who ensured smooth running of the project and achievement of milestones. 
• Charity partner, SRUK were very much part of the broader team, running the patient survey and inputting into preparation for our bid for next stage funding. 

Public contribution was key to the success of the study and. It was achieved through patient representation on the Steering Group and a series of Patient Reference Group meetings.  

 

 

How did Team Research principles benefit the project?

We facilitated efficient collaboration through open communication across levels of seniority and  shared decision-making.  Also, although each team member had their own roles, each had  an understanding of everyone else’s roles, and because of the complementary diverse backgrounds, this enabled cross-fertilisation of ideas, and shared problem-solving.

Did you encounter any major challenges or hurdles when trying to work with Team Research principles?

The impact of the Covid-19 pandemic taught us the advantages of virtual meetings. Holding meetings virtually made it very much easier for patients to attend, many of whom have mobility issues because of either musculoskeletal or cardiorespiratory involvement of their disease. As a result, virtual meetings will be part of the next phase of our research. 

What would be your top tips for working with Team Research principles?

Commitment to a common goal.

Understanding one another’s roles and complementary expertise. 

Co-creation through user or public contribution. For example, co-creation of the content/format of capillaroscopy reports.

Key publications

Gurunath Bharathi P, Berks M, Dinsdale G, Murray A, Manning J, Wilkinson S, Cutolo M, Smith V, Herrick AL, Taylor CL. A deep learning system for quantitative assessment of microvascular abnormalities in nailfold capillary images. Rheumatology 2023; 62 (6): 2325-2329.

Eden M, Wilkinson S, Murray A, Vail A, Taylor C, Payne K, Herrick AL. Nailfold capillaroscopy: a survey of current UK practice and ‘next steps’ to increase uptake amongst rheumatologists. Rheumatology 2023; 62 (1); 335-340.

Berks M, Dinsdale G, Marjanovic E, Murray A, Taylor C, Herrick AL. Comparison between low cost USB capillaroscopy and videocapillaroscopy: a pilot study. Rheumatology 2021; 60: 3862-3867.

Herrick AL, Berks M, Taylor C. Quantitative nailfold capillaroscopy – update and possible next steps.  Rheumatology 2021; 60(5):2054-2065.