ERN ReCONNET

Activities

Other publications

Other publications

The impact of COVID-19 on rare and complex connective tissue diseases: the experience of ERN ReCONNET
Rosaria Talarico, Silvia Aguilera, Tobias Alexander, Zahir Amoura, Ana M. Antunes, Laurent Arnaud, Tadej Avcin, Lorenzo Beretta, Stefano Bombardieri, Gerd R. Burmester, Sara Cannizzo, Lorenzo Cavagna, Benjamin Chaigne, Alain Cornet, Nathalie Costedoat-Chalumeau, Andrea Doria, Alessandro Ferraris, Rebecca Fischer-Betz, João E. Fonseca, Charissa Frank, Andrea Gaglioti, Ilaria Galetti, Jürgen Grunert, Vera Guimarães, Eric Hachulla, Frederic Houssiau, Luca Iaccarino, Thomas Krieg, Marteen Limper, Fransiska Malfait, Xavier Mariette, Diana Marinello, Thierry Martin, Lisa Matthews, Marco Matucci-Cerinic, Alain Meyer, Carlomaurizio Montecucco, Luc Mouthon, Ulf Müller-Ladner, Simona Rednic, Vasco C. Romão, Matthias Schneider, Vanessa Smith, Alberto Sulli, Farah Tamirou, Domenica Taruscio, Anna V. Taulaigo, Enrique Terol, Angela Tincani, Simone Ticciati, Giuseppe Turchetti, P. Martin van Hagen, Jacob M. van Laar, Ana Vieira, Jeska K. de Vries-Bouwstra, Maurizio Cutolo and Marta Mosca
Nat Rev Rheumatol (2021). doi: 10.1038/s41584-020-00565-z
The COVID-19 pandemic has brought many challenges to the already vulnerable communities of patients with rare connective tissue diseases (rCTDs). The aim of this paper is to highlight that many of these challenges can be translated into positive lessons to be applied in the post-COVID era.

RarERN Path: a methodology towards the optimisation of patients’ care pathways in rare and complex diseases developed within the European Reference Networks
Rosaria Talarico, Sara Cannizzo, Valentina Lorenzoni, Diana Marinello, Ilaria Palla, Salvatore Pirri, Simone Ticciati, Leopoldo Trieste, Isotta Triulzi, Enrique Terol, Anna Bucher and Giuseppe Turchetti
Orphanet J Rare Dis 15, 347 (2020). doi: 10.1186/s13023-020-01631-1
The object of this paper is to provide a careful description of the RarERN Path methodology, that aims to create a single reference organisational model for patients’ care pathways which, if applied in different contexts, helps to ensure an improved, cost-effective and patient-centred equal care to rare and complex diseases.

Clinical practice guidelines adherence, knowledge and awareness in rare and complex connective tissue diseases across Europe: results from the first ERN ReCONNET survey
Rosaria Talarico, Diana Marinello, Stefano Bombardieri, Gerd Burmester, Joao Fonseca, Charissa Frank, Ilaria Galetti, Eric Hachulla, Frederic Houssiau, Ulf Mueller-Ladner, Matthias Schneider, Vanessa Smith, Giuseppe Turchetti, Jacob M van Laar, Ana Vieira, Maurizio Cutolo and Marta Mosca
ERN ReCONNET developed two surveys to map the adherence to rare and complex connective tissue and musculoskeletal diseases (rCTDs) clinical practice guidelines (CPGs) among healthcare providers and to assess the knowledge and awareness of CPGs for their diseases among patients, family members and caregivers. According to the results of the surveys, ERN ReCONNET is addressing the main issues identified, promoting practical actions for the local adaptation of CPGs across Europe, improving their routine clinical use and increasing the awareness on CPGs among rCTDs patients, family members and caregivers.

Exploring patient education unmet needs for rare and complex connective tissue and musculoskeletal diseases: A survey of health care providers’ and patients’ expectations in Europe
Meryem-Maud Farhat, Alain Cornet, Charissa Frank, Ilaria Galetti, Juergen Grunert, Vera Guimarães, Ana Vieira, Eric Hachulla
Chronic Illn. 2020 Oct 22;1742395320968618. doi: 10.1177/1742395320968618
ERN ReCONNET involves health care providers (HCPs) from 8 European countries and 7 patients’ representatives of European Patient Advocacy Groups. The objective was to evaluate current practice and unmet needs for patient education (PE) in Europe. The survey revealed a strong interest in PE among patients and HCP and heterogeneity of practice. PE appeared important for both HCPs and patients. An online course for medical students in Europe will be developed in partnership with EULAR to respond to these unmet needs.

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