Clinical Practice Guidelines (CPGs) can play a crucial role in the mission of each ERN, providing an effective tool for the management of rare diseases throughout Europe while improving effectiveness and quality of care delivered to patients. With this objective in mind, ERN ReCONNET has performed a “state of the art” analysis of Clinical Practice Guidelines available for rare and complex Connective Tissue Diseases (rCTDs). The results have been published in a Supplement dedicated to the ERN ReCONNET by RMD Open, an official journal of the European League Against Rheumatism (EULAR), the reference for the community of rheumatologists in Europe.

A state of the art analysis of Clinical Practice Guidelines was performed for each disease covered by the ERN ReCONNET and results are presented in the articles included in the RMD Open Supplement, together with the results of the identification of unmet needs by Clinicians and by Patients. The work was made by conducting systematic literature reviews and through the recognition of official documents from scientific societies about Clinical Practice Guidelines for the different subgroups of rare and complex Connective Tissue Diseases. Specifically, the activities were subdivided in five steps: Step 1—Identification of existing guidelines; Step 2—Discussion on the existing guidelines; Step 3—Preliminary report on guidelines assessment; Step 4—State of the art on CPGs; Step 5—Identification of unmet needs.

The results outlined in the Supplement highlight the need to develop further actions in the framework of the ERN ReCONNET, among them the adaptation of existing CPGs to the different cultural and organisational contexts. The adaptation will be done by means of the ADAPTE process to identify, appraise, synthesise, and customise the existing international guidelines to the needs of the ERN ReCONNET healthcare context. The work on CPGs adaptation will also address one of the unmet needs identified by patients, family members and caregivers, who stressed the fact that CPGs should be more widely disseminated and adapted to the different health systems in Europe.