Updated: Jul 26
The JIR CliPS project marked a significant milestone in its first year by welcoming ten young physicians (2 per Working Group), for a one-month Short Term Scientific Mission (STSM) in Lausanne.
The program offered participants numerous opportunities, including meetings with eight experts from across Europe, engaging in extensive presentations and case discussions, receiving tutoring sessions, participating in discussions with the Lausanne University Hospital team, and working with CliPS data. The grantees devoted countless hours to analyzing the project's five different questionnaires, each related to the five medical conditions under study. Their diligent efforts aimed to contribute to the development of our CliPS, and thanks to their dedication, the project achieved a major breakthrough: the grantees successfully generated the first version of the CliPS, which will now be further refined and discussed by the five Working Groups.
Let me give you an overview of the contributions made by the grantees in each Working Group based on the analysis of the questionnaire's initial results:
Seher Sener focused on the project's methodology and extracting detailed demographics information of the participants while Valentina Natoli explored various topics, including induction and maintenance treatment approaches and targets, glucocorticoid tapering regimens, strategies for incomplete response or difficulties in weaning down glucocorticoids, availability and reimbursement of specific drugs, drug level monitoring, compliance assessment, and familiarity with the 2017 SHARE recommendations.
Working Group Vasculitis/Kawasaki Jurgita Marciulynaite's work centered around assessing treatment practices during the acute phase of Kawasaki disease (KD), managing patients resistant to initial treatment, and addressing late presentation KD and follow-up while Zeynep Balik focused on the initial treatment of KD, different steroid strategies, and refractory KD treatment.
Working Group bDMARDs in AID (Autoinflammatory Diseases) Fatih Haslak focused on defining "Colchicine resistance" for patients with familial Mediterranean fever (FMF) and initiating biologic disease-modifying anti-rheumatic drugs (bDMARDs) while Muserref Kasap Cuecoglu analyzed national recommendations for bDMARDs in FMF across nine countries.
Working Group PFAPA, SURF Margarida Santos Faria examined the diagnostic approach to periodic fever, aphthous stomatitis, pharyngitis, and cervical adenitis (PFAPA) and systemic undifferentiated recurrent fevers (SURF), including the use of genetic sequencing techniques, clinical factors influencing their use, and methodologies employed while Ricardo Craveiro da Costa analyzed the use of colchicine in the treatment of patients with PFAPA syndrome and SURF.
Working Group sJIA (systemic Juvenile Idiopathic Arthritis), AOSD (Adult-Onset Still's Disease) Yulia Vyzgha explored initial treatment approaches employed in patients diagnosed with systemic Juvenile Idiopathic Arthritis (sJIA) and (AOSD) among pediatric and adult rheumatologists while Sofia Azevedo described and defined common clinical practice strategies for treatment in sJIA and AOSD.
These comprehensive analyses were generated using data extracted from approximately 50 to 100 questionnaires, providing us with a valuable initial understanding into the approach and treatment of the five diseases under study. However, in order to obtain more meaningful outcomes, we kindly ask for your assistance. If you haven't already completed your CliPS, please request the questionnaire.
Overall, the STSM program not only resulted in the achievement of a significant milestone with the first draft of the CliPS but also left a lasting impact on the participants. Their expressions of satisfaction, gratitude, and eagerness to remain involved in the JIR CliPS program highlight the success and importance of this endeavor.
The Chairs and Vice Chairs of each Working Group are currently reviewing the work, and discussions with the Working Groups are scheduled to commence in early September. Looking ahead, approximately 30 physicians representing the five Working Groups will gather in Rotterdam by the end of September to finalize the V1 version of the CliPS library. Stay tuned for the next announcement, which will provide information on the dates and opening of applications for the STSM 2024 program.
Wishing you a delightful summer ahead !
Marie Frank, JIR CliPS Grant Holder manager Francois Hofer, JIR CliPS Scientific Representative
SHARING is CARING !
By participating in the worldwide CLIPS project, you help to improve patient management and long-term-outcome.