Subsidy for development of tools for fast and accurate rheumatic diagnosis

2 May 2023
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Digital diagnostic tools should improve the diagnostic process of patients with musculoskeletal complaints, so that they can receive the right treatment more quickly. To develop the tools, a European research consortium led by rheumatologist Rachel Knevel of the Leiden University Medical Center (LUMC) received a Horizon EU grant of 6 million euros. The ultimate goal is to improve the route to good care for rheumatic patients.

Worldwide, 1.71 billion people experience musculoskeletal complaints. Their journey to the right diagnosis is often long by consulting various practitioners before it is clear what the cause of their problem is. “The sooner a correct diagnosis is made, the sooner patients receive the right treatment from the right practitioner,” says Knevel. “There is room for all people with complaints to improve this process.”

Many patients are wrongly referred to a rheumatologist

In practice, getting the diagnosis right is not easy. Knevel: “Approximately, half of all people who visit a rheumatologist are referred back to their GP after one visit. For instance, because it concerns mechanic complaints or people would benefit more from treatment that is not given by a rheumatologist. This diagnostics inefficiency is partly caused by the great similarity in symptoms though the disease differ greatly and it is difficult for GPs to identify the subtle difference.”

Diagnostic tool for general practitioners

With the SPIDeRR (Stratification of Patients using advanced Integrative modeling of Data Routinely acquired for diagnosing Rheumatic complaints) project, the researchers wants to improve the patient journey and diagnostic accuracy by linking clinical patient data and developing the necessary algorithms and digital twins. Knevel: “For rheumatologists, two rheumatic diseases can initially be difficult to distinguish. But through data analysis of large amounts of patient data, characteristic differences can indeed be discovered.”

All this should result in three tools: a symptom checker for the patients themselves, an instrument with which the (primary) care provider makes better decisions for referral or further investigation and finally a digital rheumatology twin. “That is a tool that doctors can use to compare their own patients' syndromes with digital versions of the different disease profiles that we have learned to distinguish.”

The tool indicates the probability that a patient has a certain condition. Knevel: “This allows doctors to make a better diagnosis and thus increase the chance that they will prescribe the correct treatment. We will also investigate how doctors deal with the insights from the tool and whether the patient is satisfied. Because that's what it's all about in the end."

European cooperation

Within the project, the LUMC is collaborating in a consortium with European academic and private partners: Karolinska Institutet (SE), Stichting Reuma Nederland (NL), Elsa Science AB (SE), Delft University of Technology (NL), Friedrich Alexander Universität Erlangen-Nürnberg (DE), University of Newcastle upon Tyne (UK), Servicio Madrileno de Salud (ES), Fundación para la Investigación e innovación (ES), Phadia GmbH (DE), Semmelweis Egyetem (HU), Medizinische Hochschule Brandenburg ( DE), Instituto de Salud Musculoesquelética (ES), Idryma Iatroviologikon Ereunon Akademias Athinon (EL), IQVIA Solutions BV (NL), Erasmus University Medical Center Rotterdam (NL), Academic Health Science Network: North East and North Cumbria (UK).

Horizon Europe is one of the most important subsidy programs for research and innovation in Europe. The seven-year program has a total budget of €95.5 billion. For the 2023, 129 projects had applied, only 9 applications were honoured. For writing the application, Knevel worked closely with Erik van den Akker (LUMC and TUDelft) and was supported by Rob Wullems of ReumaNederland.

Share data securely

To achieve SPIDeRR’s a, data from primary and secondary care in all participating countries must be linked and made accessible to the data scientists in the consortium. The LUMC is a spider in the web: the IT and privacy departments have set up an appropriate infrastructure that guarantees privacy and data security.

Public Symposium

Making data accessible in a secure manner is of great importance for science. That is why the LUMC is organizing a public symposium on May 16 from 9 a.m. to 12 p.m. for data providers, data scientists, lawyers and anyone involved in this. It discusses European legislation and concrete solutions. Register here if you want to be there physically. The symposium can also be followed online: Meeting ID: 831 5709 3716

Veilig data delen

Om dit alles mogelijk te maken moet data van eerstelijns en tweedelijns zorg in alle deelnemende landen gekoppeld worden en toegankelijk gemaakt worden voor de datawetenschappers in het consortium. Het LUMC is hierin een spin in het web: de IT- en privacy-afdelingen hebben een passende infrastructuur opgezet die privacy en data security garandeert.

Publiek symposium  

Op een veilige manier data toegankelijk maken is van groot belang voor de wetenschap. Daarom organiseert het LUMC op 16 mei van 9.00 tot 12.00 uur een publiek symposium voor dataproviders, datawetenschappers, juristen en iedereen die hiermee te maken heeft. Daarin worden de Europese wetgeving en concrete oplossingen besproken. Registreer je hier als je er fysiek bij wilt zijn. Het symposium is ook online te volgen: Meeting ID: 831 5709 3716