European Alliance of Associations for Rheumatology, EULAR More extensive research expert services are now available to European investigators who seek to address the needs of people with rheumatic and musculoskeletal diseases, including advice about patient involvement strategies, pragmatic study designs, qualitative research methods, and EU grant preparation.
Kilchberg/Switzerland: Chronic and often painful rheumatic and musculoskeletal diseases (RMD) disable millions of people in the EU and worldwide. More than 200 of these conditions exist - they are mostly poorly understood without a cure in sight. Research is vital to develop better prevention and treatment strategies, but performing high quality research can pose challenges, and support for this varies across Europe. The European Alliance of Associations for Rheumatology, EULAR, has expanded its Consultation Service to address a more extensive range of research needs among investigators undertaking RMD research.
In 2020, EULAR piloted the Research Consultation Service under the umbrella of its new EULAR Research Center. Investigators are matched with experienced research experts and receive hands-on advice on study design, data analysis, and the reporting of results, among others. Initially, the service was focused on clinical and translational research projects, which received nearly 30 requests from investigators in the first few months.
High quality research is critical to improve the future lives of people with RMDs. Research conditions across Europe vary, and not all investigators have the opportunity to get advice from experienced researchers. Designing high-quality research can be challenging. A poorly designed study can rarely be recovered and will lead inevitably to poor conclusions and wasted use of valuable resource. This is the reason why we created the EULAR Consultation Service. It allows us to help level the playing field and share expert knowledge across institutions and country borders."
Dr Iain B. McInnes, EULAR Past President, Professor, University of Glasgow
The newly added support areas include (1) patient involvement strategies, (2) pragmatic study designs, (3) qualitative research methods, and (4) EU research proposal writing.
- Patient involvement is no longer limited to clinical practice but has expanded to include collaboration during the research process. "Taking the patients' point of view into account makes research tangible, relevant, and valuable for patients and their relatives", explained EULAR President Professor Annamaria Iagnocco from the University of Turin, Italy. Funders increasingly require researchers to involve patients in their research process such as selecting the research question, study design, interpretation and discussion of the study findings, and dissemination of results. "But involving patients in research can represent a challenge to conventional research practice. That's why EULAR decided to provide access to experts, including EULAR's international Patient Research Partners network, who can advise those investigators interested in partnering with patients," added Prof. Iagnocco.
- "Pragmatic studies are effectiveness studies that examine health interventions under circumstances that more closely approach real-world practice, with more heterogeneous patient populations, less-standardized study protocols, and delivery in routine clinical settings. "Pragmatic studies are different from the traditional randomized clinical trial but may be a very appropriate approach, depending on the nature of the intervention and the health care context. They require different types of study designs that some investigators may be less familiar with," said EULAR Vice President for Health Professionals in Rheumatology (HPR), Professor Thea Vliet Vlieland from the Leiden University Medical Center, The Netherlands. With this newly added support area, EULAR aims to help close this knowledge gap.
- "Qualitative research methods are required to gain insights into patients' disease experiences beliefs, and health outcomes", added Prof. Vliet Vlieland. But often, these data are not collected in clinical settings. Only 1% of studies published in top-tier rheumatology journals include qualitative research . Using EULAR's Consultation Service, investigators can get advice from qualitative research experts on these types of studies that are critical to developing patient-centered care.
- The new grant writing support will be available for investigators developing an EU research proposal for calls such as Horizon Europe or the European Research Council (ERC). Writing a highly competitive EU funding proposal can be very demanding. Even applications with good sections on expected impacts, for example, often fail to demonstrate substantial impacts beyond the "state of the art." This service provides advice on finding the right EU call, proposal structure, writing process, and take-home messages.
How to request the service and cost
The service will be available to investigators who are current residents and working in EULAR-affiliated countries. Investigators can view and request the services online by filling out a brief request form. For the first two years after the launch, these services will be provided without charge. Some limitations of use and the number of projects per individual applicant principal investigator will be applied in this period to ensure a fair use policy.