New EULAR trial center network, databases ‘crucial’ to advancing RMD care quality
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A new trial center network and two major data collection projects are among recent EULAR initiatives for improved care of patients with rheumatic and musculoskeletal diseases, according to a speaker at the EULAR 2024 Congress.
“These projects overall, taken together, really show the innovation that has taken place in EULAR this year,” Laure Gossec, MD, PhD, treasurer of EULAR and a professor of rheumatology at Pitié-Salpêtrière University Hospital and Sorbonne University, in Paris, told attendees. “They will be crucial, hopefully, in advancing our knowledge and the quality of care for our patients with [rheumatic and musculoskeletal diseases].”
During the Congress’ opening plenary session, Gossec shared what she described as “a totally new initiative” — the EULAR Network of Trial Centers (ENTRI).
“The idea is to have a network to enhance clinical trial collaboration across Europe and speeding up the development of new treatments for rheumatic diseases,” Gossec said. “This network will facilitate faster and more efficient clinical trials and ensure that innovations in treatment are tested, hopefully, comprehensively across all of the EULAR countries.”
The network’s goal is to include “experienced trial centers” alongside those with less trial experience, but where there is still “a patient base for conducting trials,” she said. Centers can apply to join the ENTRI “if they have enough patients to participate in collaborative trials,” she added.
However, improving clinical trials is not the only aim of the project.
“It’s also about nurturing the next generation of researchers,” Gossec said. “This will ensure that best practices in clinical trials are widely disseminated and adopted.”
Gossec also highlighted Rheumafacts, a repository for data on RMDs and their impacts to individuals and society. She described Rheumafacts, which EULAR launched last year, as “a dynamic resource” that has begun to provide “essential data on rheumatic diseases to foster better understanding and, also, support our advocacy activities.”
“It will especially help to identify underserved areas of care and hopefully stimulate actions to close those gaps,” Gossec said. “This will give us information on the density of health care professionals within Europe as well as the needs — but also the unmet needs — of patients and people living with RMDs.”
Gossec also discussed the EULAR Impact of RMDs survey, where patients can report “first-hand information on how all the rheumatic and musculoskeletal diseases” affect their lives. The “huge impact survey” launched last year and can be completed online.
“We really hope that patients from across Europe will be able to participate,” she said, adding that the survey is set to be translated into various European languages.
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Gossec L. Opening plenary session. Presented at: EULAR 2024 Congress; June 12 to June 15, 2024, Vienna, Austria.
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