ERN ReCONNET IgG4 Disease Group 2025 update

The main successes achieved include the launch of the initiative “ERN ReCONNET points to consider for the use of imaging in IgG4-RD“. This project aims to create a position statement and expert consensus-based recommendations, utilizing a methodology that involves a literature review and a Delphi process. The group has also contributed to the preparation of the accredited ERN-ReCONNET online course, providing highly updated training on IgG4-related disease.

The enhancement of the TogethERN RECONNET Registry with IgG4-specific variables is in progress. The Group has started defining the specific variables for the IgG4 disease.

Notably, Alexander Patsalias from Rotterdam has officially been nominated as the new ePAG (European Patient Advocacy Group) representative for IgG4-RD.

A Quality of Life Questionnaire (PROMs) has also been developed for IgG4-RD patients. An anonymous online version has been created to be shared via QR code. The project is currently focused on translation into multiple languages, execution of the survey, and preparation for final publication.

The Group is formed by an extended team of 73 members across 36 Centres in 14 Countries, all dedicated to reducing diagnostic delay and improving the management of this rare condition.