Interview with leader of SPIDeRR project: Rachel Knevel

SPIDeRR: improving targeted healthcare and disease prevention for patients with rheumatic diseases
Globally, 1.71 billion people, including 100 million within the European Union, suffer from musculoskeletal complaints, with one in three individuals expected to experience these issues in their lifetime. Despite this alarming prevalence, rheumatic and musculoskeletal diseases often remain undervalued by health professionals and the public. While some patients benefit significantly from consulting a rheumatologist, others face delays in diagnosis and treatment. The SPIDeRR project aims to transform musculoskeletal health by delivering innovative tools for diagnosing and treatment, offering renewed hope to millions worldwide. This general article, for which we interviewed rheumatologist Prof. Rachel Knevel, leader of SPIDeRR, provides an overview of the motivation, objectives, and outcomes of the project.

Accelerating rheumatic disease diagnosis

A lengthy and inefficient journey from symptom onset to treatment for patients with musculoskeletal issues often stems from delays attributed to poorly understood disease causes, overlapping symptoms across various conditions, and inadequate diagnostic tests. Diagnosis and treatment delays average twelve months for rheumatoid arthritis, nearly three years for spondyloartritis, and over six years for fibromyalgia. Moreover, the family doctor may not always be able to distinguish between rheumatic diseases, and their treatments vary significantly. Additionally, not all treatments available to rheumatologists are effective for every patient. Therefore, the sooner the optimal treatment is identified, the better the outcome.
SPIDeRR (‘Stratification of Patients using advanced Integrative modelling of data routinely acquired for diagnosing Rheumatic complaints’), which is funded by Horizon Europe, has two major objectives. Project leader Prof. Rachel Knevel, who works at Leiden University Medical Centre (LUMC) and is a visiting professor at Newcastle University, explains that the first objective of SPIDeRR is to translate current knowledge into accessible, innovative tools that can also be used by physicians other than rheumatologists. Our data, based on multiple centres, shows that rheumatologists discharge 40-70% of patients within two visits, which means that they can make the diagnosis very quickly. This raises the question if it is necessary for all these people to be seen by a rheumatologist or that tools can be developed to make that distinction earlier. The second objective focuses on expanding knowledge and improving care within the field of rheumatology by generating new insights through data linkage. Knevel: “Where we encounter limitations, such as a lack of knowledge or an inability to oversee all relevant structures, we can generate new insights by integrating all diverse datasets”.

SPIDeRR collaborates with 18 European academic and private partners, including Karolinska Institute (Sweden), the University of Erlangen–Nuremberg, Newcastle University, Erasmus university, TU Delft  and the Digital Health department of Marburg. Additionally, SPIDeRR members  include the Spanish hospital group SERMAS, the research and development institute IEE from Greece, and the Hungarian universities Semmelweis and the University of Szeged. Knevel notes that Hungary's participation in the project is particularly interesting due to its unique data infrastructure compared to the Netherlands, Sweden, and Germany, featuring a larger amount of readily accessible digital data.
Under Knevel’s supervision, the consortium brings together renowned rheumatologists, such as Prof. Loreto Carmona (Inmusc) Prof. Tom Huizinga (LUMC), Prof. Lars Klareskog, Prof. Johan Askling (both Karolinska Institute), and Prof. John Isaacs (Newcastle University), alongside a talented group of less senior researchers. Knevel: “This combination of experience and fresh perspectives fuels a dynamic approach to addressing the challenges of rheumatic diseases. Strategic partnerships with industry leaders such as Elsa Science, Thermo Fisher Scientific, and IQVIA moreover enhance the initiative's capabilities in data analysis and management. Through collaborative efforts, these partnerships pave the way for advancements in diagnostics and therapeutics. SPIDeRR is interconnected with other ongoing and completed projects, all ultimately converging towards achieving the same goal”.

The SPIDeRR project operates through 8 interconnected technical work packages, each dedicated to specific tasks. While some packages focus on data collection, others emphasize analysis. Knevel describes her multifaceted role as involving both initiating much of the consortium's content, while also building upon existing ideas, consortia, and previously secured grants. “I oversee the development of ideas we have already conceived. In some projects, I take on a more directive role, while in other work packages I serve as an advisor, allowing others to lead”, she says. Interviews with the leaders of the work packages that have been conducted to provide insight into their focus and activities, are available here.

• A symptom checker, named 'Rheumatic', empowering patients to assess their symptoms and make informed decisions about seeking appropriate care
• A decision support tool, 'Modular SPIDeRR', designed for primary care providers to guide further examinations and referral decisions, enhancing patient care
• A patient-patient similarity network (‘Rheumatic Digital Twin’), aimed at optimizing diagnostic groups in rheumatology and aiding in treatment decisions, promoting personalized care.

In order to ensure that the final product will be truly useful, one work package focuses completely on the feasibility and acceptability for stakeholders such as patients and physicians. Knevel explains that in SPIDeRR, Rheumatic is enhanced through collaboration with ReumaNederland and Elsa Science. “This unique partnership aims to improve care and symptom inquiries. ReumaNederland provides access to a broader patient group, while Elsa Science transforms the questionnaire into an appealing online tool. This three-way collaboration promises a successful study with high patient satisfaction and a practical implementable tool”, Knevel says.