Fiche publication
Date publication
juillet 2026
Journal
Orphanet journal of rare diseases
Auteurs
Membres identifiés du Cancéropôle Est :
Dr DEVILLIERS Hervé
Tous les auteurs :
Arnaud L, Pons-Estel G, Gatto M, Tani C, Devilliers H, Talarico R, Turchetti G, Mosca M
Lien Pubmed
Résumé
The ReCONNET-ELICIT methodology represents an innovative and systematic approach to gather expert consensus on complex, high-level concepts related to rare connective tissue and musculoskeletal diseases (rCTDs). Developed within the framework of European Reference Networks (ERNs) ReCONNET, this methodology aims to overcome the challenges associated with defining complex features that lack consensus in rCTDs, such as composite definitions for severe or refractory disease. The core premise of RECONNET-ELICIT is that individual expertise, including that of experts, is inherently limited, but that aggregating insights from a sufficiently large and diverse group can achieve extensive and relevant facet elicitation. The RECONNET-ELICIT process begins with assembling a diverse panel from various geographical backgrounds. This inclusive approach ensures that multiple perspectives are considered. The next step involves crowdsourcing responses through an online survey, where participants suggest as many facets of the high-level concept as possible. These proposals are then systematically analyzed and recoded into broader categories through a consensus-driven binning process. Following this, the panel reviews the consolidated list of facets and votes on their final inclusion, typically utilizing rating scales to minimize bias. This approach is particularly valuable in rCTD contexts where limited data are available. Overall, ReCONNET-ELICIT aim at enhancing the clarity and shared understanding of complex disease concepts by integrating expert insights within an asynchronous, structured, participatory framework while avoiding dominance bias. Its flexibility and focus on collective agreement make it especially useful for advancing knowledge and improving management strategies for rare CTDs.
Référence
Orphanet J Rare Dis. 2026 07 15;:
