{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,14]],"date-time":"2026-04-14T23:30:55Z","timestamp":1776209455451,"version":"3.50.1"},"reference-count":19,"publisher":"BMJ","issue":"2","license":[{"start":{"date-parts":[[2020,8,17]],"date-time":"2020-08-17T00:00:00Z","timestamp":1597622400000},"content-version":"vor","delay-in-days":16,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["RMD Open"],"accepted":{"date-parts":[[2020,8,10]]},"published-print":{"date-parts":[[2020,8]]},"abstract":"<jats:sec id=\"s1\">\n                  <jats:title>Introduction<\/jats:title>\n                  <jats:p>The European Reference Network (ERN) ReCONNET is the ERN aimed at improving the management of rare and complex connective tissue and musculoskeletal diseases (rCTDs) across the European Union (EU). In the mission of ERN ReCONNET, clinical practice guidelines (CPGs) play a crucial role, representing a valid tool towards the harmonisation of the management of rCTDs while improving effectiveness and quality of care delivered to patients.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec id=\"s2\">\n                  <jats:title>Methods<\/jats:title>\n                  <jats:p>ERN ReCONNET developed two surveys to map the adherence to rCTDs CPGs among healthcare providers and to assess the knowledge and awareness of CPGs for their diseases among patients, family members and caregivers.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec id=\"s3\">\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>The results of the surveys highlighted that healthcare professionals find it useful to apply CPGs in clinical practice (93%), while 62% of them experience difficulties and barriers in the application in their centres. Healthcare professionals also highlighted the need to develop CPGs for all rCTDs and to implement the use of the existing CPGs in clinical practice. On the other hand, patients, families and caregivers are relatively aware of the purpose of CPGs (51%) and 62% of them were aware of the existence of CPGs for their disease. Patient-friendly versions of CPGs and patients\u2019 lifestyle guidelines should be systematically developed contributing to the empowerment of patients in the disease management.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec id=\"s4\">\n                  <jats:title>Conclusion<\/jats:title>\n                  <jats:p>ERN ReCONNET is addressing the main issues identified in the results of the survey, 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.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1136\/rmdopen-2020-001344","type":"journal-article","created":{"date-parts":[[2020,8,31]],"date-time":"2020-08-31T17:45:13Z","timestamp":1598895913000},"page":"e001344","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":13,"title":["Clinical practice guidelines adherence, knowledge and awareness in rare and complex connective tissue diseases across Europe: results from the first ERN ReCONNET survey"],"prefix":"10.1136","volume":"6","author":[{"given":"Rosaria","family":"Talarico","sequence":"first","affiliation":[{"name":"Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy"}]},{"given":"Diana","family":"Marinello","sequence":"additional","affiliation":[{"name":"Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy"}]},{"given":"Stefano","family":"Bombardieri","sequence":"additional","affiliation":[{"name":"University of Pisa, Pisa, Italy"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7518-1131","authenticated-orcid":false,"given":"Gerd","family":"Burmester","sequence":"additional","affiliation":[{"name":"Department of Rheumatology and Clinical Immunology, Charit\u00e9 Universit\u00e4tsmedizin Berlin, Berlin, Germany"}]},{"given":"Joao","family":"Fonseca","sequence":"additional","affiliation":[{"name":"Servi\u00e7o De Reumatologia E Doen\u00e7as \u00d3sseas Metab\u00f3licas, Centro Hospitalar Universit\u00e1rio Lisboa Norte E.P.E, Lisboa, Portugal"},{"name":"Instituto de Medicina Molecular, Faculdade de Medicina, Universidade de Lisboa, Centro Acad\u00e9mico de Medicina de Lisboa, Lisboa, Portugal"}]},{"given":"Charissa","family":"Frank","sequence":"additional","affiliation":[{"name":"Flemish Association for Hereditary Connective Tissue Disorders in Belgium, Koersel, Belgium"}]},{"given":"Ilaria","family":"Galetti","sequence":"additional","affiliation":[{"name":"FESCA, Federation of European Scleroderma Associations, Milan, Italy"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7432-847X","authenticated-orcid":false,"given":"Eric","family":"Hachulla","sequence":"additional","affiliation":[{"name":"D\u00e9partement de M\u00e9decine Interne et Immunologie Clinique, Centre de R\u00e9f\u00e9rence des Maladies Auto-Immunes Syst\u00e9miques Rares du Nord et Nord-Ouest de France, Centre Hospitalier Universitaire de Lille, Lille, France"}]},{"given":"Frederic","family":"Houssiau","sequence":"additional","affiliation":[{"name":"Department of Rheumatology, Cliniques Universitaires Saint-Luc, Universit\u00e9 Catholique De Louvain, Louvain-la-Neuve, Belgium"}]},{"given":"Ulf","family":"Mueller-Ladner","sequence":"additional","affiliation":[{"name":"Department of Rheumatology and Clinical Immunology, Kerckhoff-Klinik GmbH, Bad Nauheim, Germany"},{"name":"Justus Liebig Universitat Giessen, Giessen, Germany"}]},{"given":"Matthias","family":"Schneider","sequence":"additional","affiliation":[{"name":"Department of Rheumatology, Universit\u00e4tsklinikum D\u00fcsseldorf, D\u00fcsseldorf, Germany"}]},{"given":"Vanessa","family":"Smith","sequence":"additional","affiliation":[{"name":"Department of Rheumatology, Ghent University Hospital, Ghent, Belgium"},{"name":"Department of Internal 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