ERN ReCONNET

Our Activities

Publications

Publications

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.

 

State of the Art on clinical practice guidelines on rare and complex Connective Tissue Diseases

The Supplement presents a short report on the first year of activity of the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases, ten reviews on clinical practice guidelines of the Diseases covered by the ERN ReCONNET project, and a report on rCTDS Health Economics. This is one of the first results of the collaboration of Healthcare Providers and Patients in the framework of the ERN ReCONNET.

Click here to see the table of contents of the Supplement or click below to find the specific links to the single articles.

Clinical practice guidelines: the first year of activity of the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ERN ReCONNET)
Marta Mosca and Maurizio Cutolo
RMD Open 2019;4:e000791. doi: 10.1136/rmdopen-2018-000791

Antiphospholipid syndrome: state of the art on clinical practice guidelines
Marteen Limper, Carlo Alberto Scirè, Rosaria Talarico, Zahir Amoura, Tadej Avcin, Martina Basile, Gerd Burmester, Linda Carli, Ricard Cervera, Nathalie Costedoat-Chalumeau, Andrea Doria, Thomas Dörner, João Eurico Fonseca, Ilaria Galetti, Eric Hachulla, David Launay, Filipa Lourenco, Carla Macieira, Pierluigi Meroni, Carlo Maurizio Montecucco, Maria Francisca Moraes-Fontes, Luc Mouthon, Cecilia Nalli, Veronique Ramoni, Maria Tektonidou, Jacob M van Laar, Stefano Bombardieri, Matthias Schneider, Vanessa Smith, Ana Vieira, Maurizio Cutolo, Marta Mosca and Angela Tincani
RMD Open 2018;4:e000785. doi: 10.1136/rmdopen-2018-000785

Ehlers-Danlos syndromes: state of the art on clinical practice guidelines
Alberto Sulli, Rosaria Talarico, Carlo Alberto Scirè, Tadej Avcin, Marco Castori, Alessandro Ferraris, Charissa Frank, Jürgen Grunert, Sabrina Paolino, Stefano Bombardieri, Matthias Schneider, Vanessa Smith, Maurizio Cutolo, Marta Mosca and Fransiska Malfait
RMD Open 2018;4:e000790. doi: 10.1136/rmdopen-2018-000790

Idiopathic inflammatory Myopathies: state of the art on clinical practice guidelines
Alain Meyer, Carlo Alberto Scirè, Rosaria Talarico, Tobias Alexander, Zahir Amoura, Tadej Avcin, Simone Barsotti, Lorenzo Beretta, Jelena Blagojevic, Gerd Burmester, Ilaria Cavazzana, Patrick Cherrin, Laura Damian, Andrea Doria, João Eurico Fonseca, Federica Furini, Ilaria Galetti, Frederic Houssiau, Thomas Krieg, Maddalena Larosa, David Launay, Raquel C
ampanilho-Marques, Thierry Martin, Marco Matucci-Cerinic, Pia Moinzadeh, Carlomaurizio Montecucco, Maria Francisca Moraes-Fontes, Luc Mouthon, Rossella Neri, Sabrina Paolino, Yves Piette, Simona Rednic, Farah Tamirou, Angela Tincani, Natasa Toplak, Stefano Bombardieri, Eric Hachulla, Ulf Mueller-Ladner, Matthias Schneider, Vanessa Smith, Ana Vieira, Maurizio Cutolo, Marta Mosca and Lorenzo Cavagna

IgG4-related disease: state of the art on clinical practice guidelines
Luca Iaccarino, Rosaria Talarico, Carlo Alberto Scirè, Zahir Amoura, Gerd Burmester, Andrea Doria, Karim Faiz, Charissa Frank, Eric Hachulla, Miguel Hie, David Launay, Carlomaurizio Montecucco, Sara Monti, Luc Mouthon, Angela Tincani, Paola Toniati, Pieter Martin Van Hagen, Ronald F Van Vollenhoven, Stefano Bombardieri, Ulf Mueller-Ladner, Matthias Schneider, Vanessa Smith, Maurizio Cutolo, Marta Mosca and Tobias Alexander

Mixed connective tissue disease: state of the art on clinical practice guidelines
Benjamin Chaigne, Carlo Alberto Scirè, Rosaria Talarico, Tobias Alexander, Zahir Amoura, Tadej Avcin, Lorenzo Beretta, Andrea Doria, Aurelien Guffroy, Vera Guimarães, Éric Hachulla, Thomas Krieg, David Launay, Gemma Lepri, Pia Moinzadeh, Ulf Müller-Ladner, Simona Rednic, Ana Rodrigues, Sander Tas W, R F van Vollenhoven, Ana Vieira, Stefano Bombardieri, João Eurico Fonseca, Ilaria Galetti, Matthias Schneider, Vanessa Smith, Maurizio Cutolo, Marta Mosca and Rebecca Fischer-Betz
RMD Open 2019;4:e000783. doi: 10.1136/rmdopen-2018-000783

Relapsing polychondritis: state of the art on clinical practice guidelines
Simona Rednic, Laura Damian, Rosaria Talarico, Carlo Alberto Scirè, Alexander Tobias, Nathalie Costedoat-Chalumeau, David Launay, Alexis Mathian, Lisa Mattews, Cristina Ponte, Paola Toniati, Stefano Bombardieri, Charissa Frank, Matthias Schneider, Vanessa Smith, Maurizio Cutolo, Marta Mosca and Laurent Arnaud

Sjögren’s syndrome: state of the art on clinical practice guidelines
Vasco C Romão, Rosaria Talarico, Carlo Alberto Scirè, Ana Vieira, Tobias Alexander, Chiara Baldini, Jacques-Eric Gottenberg, Heidi Gruner, Eric Hachulla, Luc Mouthon, Martina Orlandi, Cristina Pamfil, Marc Pineton de Chambrun, Marco Taglietti, Natasa Toplak, Paul van Daele, Jacob M van Laar, Stefano Bombardieri, Matthias Schneider, Vanessa Smith, Maurizio Cutolo, Marta Mosca and Xavier Mariette

Systemic Lupus Erythematosus: state of the art on clinical practice guidelines
Farah Tamirou, Laurent Arnau
d, Rosaria Talarico, Carlo Alberto Scirè, Tobias Alexander, Zahir Amoura, Tadej Avcin, Alessandra Bortoluzzi, Ricard Cervera, Fabrizio Conti, Alain Cornet, Hervé Devilliers, Andrea Doria, Micol Frassi, Micaela Fredi, Marcello Govoni, Frederic Houssiau, Ana Lladò, Carla Macieira, Thierry Martin, Laura Massaro, Maria Francisca Moraes-Fontes, Cristina Pamfil, Sabrina Paolino, Chiara Tani, Sander W Tas, Maria Tektonidou, Angela Tincani, Ronald F Van Vollenhoven, Stefano Bombardieri, Gerd Burmester, João Eurico Fonseca, Ilaria Galetti, Eric Hachulla, Ulf Mueller-Ladner, Matthias Schneider, Vanessa Smith, Maurizio Cutolo, Marta Mosca and Nathalie Costedoat-Chalumeau

Systemic sclerosis: state of the art on clinical practice guidelines
Vanessa Smith, Carlo Alberto Scirè, Rosaria Talarico, Paolo Airo, Tobias Alexander, Yannick Allanore, Cosimo Bruni, Veronica Codullo, Virgil Dalm, Jeska De Vries-Bouwstra, Alessandra Della Rossa, Oliver Distler, Ilaria Galetti, David Launay, Gemma Lepri, Alexis Mathian, Luc Mouthon, Barbara Ruaro, Alberto Sulli, Angela Tincani, Els Vandecasteele, Amber Vanhaecke, Marie Vanthuyne, Frank Van den Hoogen, Ronald Van Vollenhoven, Alexandre E Voskuyl, Elisabetta Zanatta, Stefano Bombardieri, Gerd Burmester, Fonseca João Eurico, Charissa Frank, Eric Hachulla, Frederic Houssiau, Ulf Mueller-Ladner, Matthias Schneider, Jacob M van Laar, Ana Vieira, Maurizio Cutolo, Marta Mosca and Marco Matucci-Cerinic

Undifferentiated Connective Tissue Disease: state of the art on clinical practice guidelines
Margarida Antunes, Carlo Alberto Scirè, Rosaria Talarico, Tobias Alexander, Tadej Avcin, Chiara Belocchi, Andrea Doria, Franco Franceschini, Ilaria Galetti, Marcello Govoni, Eric Hachulla, David Launay, Gemma Lepri, Carla Macieira, Marco Matucci-Cerinic, Carlo Maurizio Montecucco, Maria Francisca Moraes-Fontes, Luc Mouthon, Sabrina Paolino, Veronique Ramoni, Chiara Tani, Sander W Tas, Angela Tincani, Ronald Van Vollenhoven, Margherita Zen, Joao Fonseca, Stefano Bombardieri, João Eurico Fonseca, Matthias Schneider, Vanessa Smith, Maurizio Cutolo, Marta Mosca and Lorenzo Beretta

Rare diseases under different levels of economic analysis: current activities, challenges and perspectives
Sara Cannizzo, Valentina Lorenzoni, Ilaria Palla, Salvatore Pirri, Leopoldo Trieste, Isotta Triulzi, Giuseppe Turchetti

Subscribe to our Newsletter