RarERN Path: a methodology towards the optimisation of patients’ care pathways in rare and complex diseases developed within the European Reference Networks

Autor: Talarico Rosaria, Cannizzo Sara, Lorenzoni Valentina, Marinello Diana, Palla Ilaria, Pirri Salvatore, Ticciati Simone, Trieste Leopoldo, Triulzi Isotta, Terol Enrique, Bucher Anna, Turchetti Giuseppe

Publikováno v: Orphanet Journal of Rare Diseases, Vol 15, Iss 1, Pp 1-10 (2020)

Abstract Background In 2017, the European Commission has launched the European Reference Networks (ERNs), virtual networks involving healthcare providers across Europe. The aim of the ERNs is to tackle complex and rare diseases and conditions that re

Externí odkaz: https://doaj.org/article/77d74abf531640ae92c90a2d084ec428

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An Organizational Model for a Primary Care Program of Home Health Care in Spain: A Description of the Program.

Autor: Terol, Enrique, Hamby, Eileen F., Sacristan, Antonio, Sanz, Francisco, Minue, Sergio, Gil, Dolores, Paniagua, Ma. Angeles

Publikováno v: Health Care Manager; Dec2001, Vol. 20 Issue 2, p18, 10p

Publisher Correction: The impact of COVID-19 on rare and complex connective tissue diseases: the experience of ERN ReCONNET.

Autor: Talarico R; Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy., Aguilera S; Spanish Association for Antiphospholipid Syndrome (SAF España), Elche, Spain., Alexander T; Department of Rheumatology and Clinical Immunology, Charité University Medicine Berlin, Berlin, Germany., Amoura Z; Department of Internal Medicine, Hospital Pitié-Salpêtrière, Assistance Publique Hôpitaux de Paris, French National Referral Center for SLE and APS, Paris, France., Antunes AM; Auto-immune Disease Unit, Hospital de Curry Cabral, Centro Hospitalar de Lisboa Central, EPE, Lisbon, Portugal., Arnaud L; Service de rhumatologie, Hôpitaux Universitaires de Strasbourg, Centre National de Référence des Maladies Systémiques et Auto-immunes Rares Grand-Est Sud-Ouest (RESO), Strasbourg, France., Avcin T; Department of Allergology, Rheumatology and Clinical Immunology, University Children's Hospital, University Medical Centre Ljubljana, Ljubljana, Slovenia., Beretta L; Referral Center for Systemic Autoimmune Diseases, Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico di Milano, Milan, Italy., Bombardieri S; University of Pisa, Pisa, Italy., Burmester GR; Department of Rheumatology and Clinical Immunology, Charité University Medicine Berlin, Berlin, Germany., Cannizzo S; Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy.; Institute of Management, Scuola Superiore Sant'Anna, Pisa, Italy., Cavagna L; Department of Rheumatology, IRCCS Policlinico San Matteo Foundation, Pavia, Italy., Chaigne B; Service de Médecine Interne, Hôpital Cochin, Centre de Référence Maladies systémiques Autoimmunes Rares d'Ile de France, Assistance Publique-Hôpitaux de Paris (AP-HP), Université de Paris, Paris, France., Cornet A; Lupus Europe, Brussels, Belgium., Costedoat-Chalumeau N; Service de Médecine Interne, Hôpital Cochin, Centre de Référence Maladies systémiques Autoimmunes Rares d'Ile de France, Assistance Publique-Hôpitaux de Paris (AP-HP), Université de Paris, Paris, France., Doria A; Rheumatology Unit, Department of Medicine, University of Padova, Padova, Italy., Ferraris A; Medical Genetics Laboratory, Molecular Medicine Department, San Camillo Forlanini Hospital, Sapienza University, Rome, Italy., Fischer-Betz R; Department of Rheumatology, University Hospital Düsseldorf, Heinrich-Heine-University Düsseldorf, Düsseldorf, Germany., Fonseca JE; Rheumatology Department, Hospital de Santa Maria, Centro Hospitalar Lisboa Norte, Lisbon Academic Medical Centre, Lisbon, Portugal., Frank C; Flemish Association for Hereditary Connective Tissue Disorders, Koersel, Belgium., Gaglioti A; Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy., Galetti I; Federation of European Scleroderma Associations (FESCA), Milan, Italy., Grunert J; Deutsche Ehlers-Danlos Initiative e.V., Furth, Germany., Guimarães V; Liga Portuguesa Contra as Doenças Reumáticas, Lisbon, Portugal., Hachulla E; Département de Médecine Interne et Immunologie Clinique, Centre de Référence des Maladies Systémiques et Auto-Immunes Rares du Nord-Ouest (CERAINO), LIRIC, INSERM, Univ. Lille, CHU Lille, Lille, France., Houssiau F; Department of Rheumatology, Cliniques Universitaires Saint-Luc, Brussels, Belgium., Iaccarino L; Rheumatology Unit, Department of Medicine, University of Padova, Padova, Italy., Krieg T; Department of Dermatology, Universitätsklinikum, Cologne, Germany., Limper M; Department of Rheumatology and Clinical Immunology, University Medical Center Utrecht, Utrecht University, Utrecht, Netherlands., Malfait F; Center for Medical Genetics, Ghent University Hospital, Ghent, Belgium., Mariette X; Université Paris-Saclay, INSERM, CEA, Centre de recherche en Immunologie des infections virales et des maladies auto-immunes; AP-HP. Université Paris-Saclay, Hôpital Bicêtre, Rheumatology Department, Le Kremlin Bicêtre, Paris, France., Marinello D; Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy., Martin T; Clinical immunology department, Hôpitaux Universitaires de Strasbourg, Centre National de Référence des Maladies Systémiques et Auto-immunes Rares Grand-Est Sud-Ouest (RESO), Strasbourg, France., Matthews L; Relapsing Polychondritis Awareness and Support, Worcester, UK., Matucci-Cerinic M; Division of Rheumatology and Scleroderma Unit, Department of Clinical and Experimental Medicine, AOU Careggi, University of Florence, Florence, Italy., Meyer A; Service de rhumatologie, Hôpitaux Universitaires de Strasbourg, Centre National de Référence des Maladies Systémiques et Auto-immunes Rares Grand-Est Sud-Ouest (RESO), Strasbourg, France., Montecucco C; Department of Rheumatology, IRCCS Policlinico San Matteo Foundation, Pavia, Italy., Mouthon L; Service de Médecine Interne, Hôpital Cochin, Centre de Référence Maladies systémiques Autoimmunes Rares d'Ile de France, Assistance Publique-Hôpitaux de Paris (AP-HP), Université de Paris, Paris, France., Müller-Ladner U; Department of Rheumatology and Clinical Immunology, Kerckhoff Klinik, Justus Liebig University of Giessen, Bad Nauheim, Germany., Rednic S; Department of Rheumatology, Emergency County Teaching Hospital, Cluj-Napoca, Romania., Romão VC; Rheumatology Department, Hospital de Santa Maria, Centro Hospitalar Lisboa Norte, Lisbon Academic Medical Centre, Lisbon, Portugal., Schneider M; Department of Rheumatology, University Hospital Düsseldorf, Heinrich-Heine-University Düsseldorf, Düsseldorf, Germany., Smith V; Department of Rheumatology, Ghent University Hospital Department of Internal Medicine, Ghent, Belgium., Sulli A; Research Laboratory and Academic Division of Clinical Rheumatology, Department of Internal Medicine, IRCCS Polyclinic Hospital San Martino, University of Genoa, Genoa, Italy., Tamirou F; Department of Rheumatology, Cliniques Universitaires Saint-Luc, Brussels, Belgium., Taruscio D; National Centre for Rare Diseases, Istituto Superiore di Sanità, Rome, Italy., Taulaigo AV; Auto-immune Disease Unit, Hospital de Curry Cabral, Centro Hospitalar de Lisboa Central, EPE, Lisbon, Portugal., Terol E; Directorate-General for Health and Food Safety, European Commission, Brussels, Belgium., Tincani A; Rheumatology and Clinical Immunology Unit, ASST-Spedali Civili and University of Brescia, Brescia, Italy., Ticciati S; Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy., Turchetti G; Institute of Management, Scuola Superiore Sant'Anna, Pisa, Italy., van Hagen PM; Department of Internal Medicine and Immunology, Erasmus MC, Rotterdam, Netherlands., van Laar JM; Department of Rheumatology and Clinical Immunology, University Medical Center Utrecht, Utrecht University, Utrecht, Netherlands., Vieira A; Liga Portuguesa Contra as Doenças Reumáticas, Núcleo Síndrome de Sjögren, Lisbon, Portugal., de Vries-Bouwstra JK; Department of Rheumatology, Leiden University Medical Center, Leiden, The Netherlands., Cutolo M; Research Laboratory and Academic Division of Clinical Rheumatology, Department of Internal Medicine, IRCCS Polyclinic Hospital San Martino, University of Genoa, Genoa, Italy., Mosca M; Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy. ern.reconnet@ao-pisa.toscana.it.; Rheumatology Unit, University of Pisa, Pisa, Italy. ern.reconnet@ao-pisa.toscana.it.

Publikováno v: Nature reviews. Rheumatology [Nat Rev Rheumatol] 2022 Dec; Vol. 18 (12), pp. 734.