ERN ReCONNET RP Disease Group 2025 update
The Relapsing Polychondritis (RP) Disease Group achieved significant progress in 2025, focusing on standardizing diagnosis and improving Patient-Reported Outcomes (PROMs).
The RP Disease group worked on and partially finalised several projects:
- Red Flags for RP: A consensus was reached to define a series of clinical clues that ‘flag’ the diagnosis of RP.
- TogethERN ReCONNET Registry: The selection of variables to be included in the TogethERN ReCONNET registry was completed.
- Quality of Life in RP (RP-QoL): Following the creation of a new methodology for the cross-adaptation of instruments for patients in the context of rare CTDs, the impact of RP on patients’ lives was assessed in a survey. This resulted in the extraction of the most impactful quality of life domains and the development of the disease-specific instrument, the RP-QoL. An initial English pilot version of the RP-QoL was assessed by 16 participants. All participants reported that the pilot RP-QoL was adequate regarding clarity of instructions, clarity of questions, clarity of the rating scale, cultural relevance, ease of answering, and adequate length. A new cross-adaptation process was finalised and the RP-QoL is now available in English, French, German, and Spanish.
- A RP disease-specific module was finalised and integrated into the ERN ReCONNET accredited online course on rCTDs.
The Group successfully held two webinars: Imaging in Relapsing Polychondritis (RP) on May 28th, presented by Valentin S. Schäfer, and Quality of life in Relapsing Polychondritis (RP) on December 3rd, presented by Laurent Arnaud and Philippe Mertz.
A key publication detailing the cross-cultural adaptation methodology was released (PMID: 40375068). Additionally, the poster “Intercultural adaptation of research and care instruments in the context of rare systemic diseases (ReCONNET-CROSSADAPT)” was presented by Oliver Sander at the EV.08 DGRh Congress 2025 in Düsseldorf.
The finalised versions of the RP-QoL are currently open for validation and distributed to the corresponding patient groups. Versions are available via online surveys in English, Spanish, French, German, and Romanian. Furthermore, RP-QoL versions in Portuguese, Catalan, Italian, and Hindi were prepared and are on the way to finalisation.
The planned project for 2026 is the re-consolidation of the RP-group and selection of new projects.
The RP Disease Group expressed thanks to all active members and external supporters who participated in the 2025 projects. Special thanks were extended to Laurent Arnaud for his dedicated, effective coordination and many ideas over the past years. The Group is now also pleased to welcome Dr. Oliver Sander (Universitätsklinikum Düsseldorf) who, together with Prof. Simona Rednic and e-PAG representatives Lisa Matthews and Camelia Bucsa, will coordinate the RP Disease Group moving forward
