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The added value of a European Reference Network on rare and complex connective tissue and musculoskeletal diseases: insights after the first 5 years of the ERN ReCONNET

1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 15, 16, 17, 18, 19, 20, 21, 22, 23, 24, 25, 26, 27, 28, 29, 30, 31, 32, 33, 34, 35, 36, 37, 38, 39, 40, 41, 42, 43, 44, 45, 46, 47, 48, 49, 50, 51, 52, 53, 54, 55, 56, 57, 58, 59, 60, 61, 62, 63, 64, 65, 66, 67, 68, 69, 70, 71, 72

 

  1. Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy.
  2. Spanish Association for Antiphospholipid Syndrome (SAF España), Elche, Spain.
  3. Department of Rheumatology and Clinical Immunology, Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Berlin, Germany.
  4. Department of Internal Medicine, Hospital Pitié-Salpêtrière, Assistance Publique Hôpitaux de Paris, French National Referral Center for SLE and APS, Paris, France.
  5. Lupus Europe, Brussels, Belgium.
  6. 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.
  7. Department of Allergology, Rheumatology and Clinical Immunology, University Children’s Hospital, University Medical Centre Ljubljana, Ljubljana, Slovenia.
  8. Reumatología, Hospital Universitari de Vall Hebron, Barcelona, Spain.
  9. Referral Center for Systemic Autoimmune Diseases, Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico di Milano, Italy.
  10. University of Pisa, Italy.
  11. Department of Medical Sciences, Rheumatology Section, University of Ferrara, Azienda Ospedaliero-Universitaria Sant’Anna di Cona, Ferrara, Italy.
  12. Sjögren Europe, Bienne, Switzerland.
  13. Department of Internal Diseases, Rheumatology Centre, Paul Stradins Clinical University Hospital, Riga, Latvia.
  14. Department of Rheumatology and Clinical Immunology, Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Berlin, Germany.
  15. Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy.
  16. Department of Rheumatology, IRCCS Policlinico San Matteo Foundation, Pavia, Italy.
  17. 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, France.
  18. Lupus Europe, Brussels, Belgium.
  19. Relapsing Polychondritis Awareness and Support, Worcester, UK.
  20. 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, France.
  21. Departement of Paediatrics, Riga Stradiņš University (RSU), Riga, Latvia.
  22. Rheumatology Unit, Department of Medicine, University of Padova, Italy.
  23. Mater Dei Hospital, Msida, Malta.
  24. Medical Genetics Laboratory, Molecular Medicine Department, San Camillo Forlanini Hospital, Sapienza University, Rome, Italy.
  25. Department of Rheumatology, University Hospital Düsseldorf, Heinrich-Heine-University Düsseldorf, Germany.
  26. Rheumatology Department, Hospital de Santa Maria, Centro Hospitalar Universitário Lisboa Norte, Lisbon Academic Medical Centre and Rheumatology Research Unit, Instituto de Medicina Molecular, Faculdade de Medicina, Universidade de Lisboa, Portugal.
  27. Flemish Association for Hereditary Connective Tissue Disorders, Koersel, Belgium.
  28. Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy.
  29. Federation of European Scleroderma Associations (FESCA), Milan, Italy.
  30. Liga Portuguesa Contra as Doenças Reumáticas, Lisbon, Portugal.
  31. Département de Médecine Interne et Immunologie Clinique, Centre de Référence des Maladies Systémiques et Auto-Immunes Rares du Nord-Ouest (CERAINO), LIRIC, INSERM, Université de Lille, CHU Lille, France.
  32. Federation of European Scleroderma Associations (FESCA), Milan, Italy.
  33. Department of Rheumatology, Cliniques Universitaires Saint-Luc, Brussels, Belgium.
  34. Rheumatology Unit, Department of Medicine, University of Padova, Italy.
  35. Copenhagen Lupus and Vasculitis Clinic, Rigshospitalet, Copenhagen, Denmark.
  36. Department of Rheumatology and Clinical Immunology, University Medical Center Utrecht, Utrecht University, The Netherlands.
  37. Center for Medical Genetics, Ghent University Hospital and Department for Biomolecular Medicine, Ghent University, Ghent, Belgium.
  38. Université Paris-Saclay, INSERM, CEA, Centre de recherche en Immunologie des infections virales et des maladies auto-immunes; AP-HP, Hôpital Bicêtre, Rheumatology Department, Le Kremlin Bicêtre, France.
  39. Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy.
  40. Service d’Immunologie Clinique, Hôpitaux Universitaires de Strasbourg, Centre National de Référence des Maladies Systémiques et Autoimmunes Rares Grand-Est Sud-Ouest (RESO), Strasbourg, France.
  41. Relapsing Polychondritis Awareness and Support, Worcester, UK.
  42. Department of Experimental and Clinical Medicine, University of Florence, and Division of Rheumatology AOUC, Florence, and Unit of Immunology, Rheumatology, Allergy and Rare Diseases (UnIRAR), IRCCS San Raffaele Hospital, Milan, Italy.
  43. 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.
  44. Department of Rheumatology, Clinical Immunology and Allergology, University Hospital Osijek, Croatia.
  45. Department of Dermatology, Universitätsklinikum, Cologne, Germany.
  46. Department of Rheumatology, IRCCS Policlinico San Matteo Foundation, Pavia, Italy.
  47. 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, France.
  48. Department of Rheumatology and Clinical Immunology, Kerckhoff Klinik, Justus Liebig University of Giessen, Bad Nauheim, Germany.
  49. Department of Rheumatology and Clinical Immunology, Department of Internal Medicine and Oncology, Semmelweis University, Budapest, Department of Genetics, Cell and Immunobiology, Semmelweis University, Budapest, and Heart and Vascular Centre, Semmelweis University, Budapest, Hungary.
  50. Auto-immune Disease Unit, Hospital de Curry Cabral, Centro Hospitalar de Lisboa Central, EPE, Lisbon, Portugal.
  51. Department of Rheumatology, Hospital of Lithuanian University of Health Sciences, Kaunas, Lithuania.
  52. Children’s Clinic, Tartu University Hospital, Tartu, Estonia.
  53. Department of Rheumatology, Emergency County Teaching Hospital, Cluj-Napoca, Romania.
  54. Rheumatology Department, Hospital de Santa Maria, Centro Hospitalar Universitário Lisboa Norte, Lisbon Academic Medical Centre and Rheumatology Research Unit, Instituto de Medicina Molecular, Faculdade de Medicina, Universidade de Lisboa, Portugal.
  55. Department of Rheumatology, University Hospital Düsseldorf, Heinrich-Heine-University Düsseldorf, Germany.
  56. School of Medicine and Surgery, University of Milano-Bicocca, Milan, Italy.
  57. Department of Rheumatology, Ghent University Hospital Department of Internal Medicine, Ghent, Belgium, Unit for Molecular Immunology and Inflammation, VIB Inflammation Research Centre (IRC), Ghent, Belgium.
  58. Research Laboratory and Academic Division of Clinical Rheumatology, Department of Internal Medicine, IRCCS Polyclinic Hospital San Martino, University of Genoa, Italy.
  59. Department of Rheumatology, Cliniques Universitaires Saint-Luc, Brussels, Belgium.
  60. Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy.
  61. National Centre for Rare Diseases, Istituto Superiore di Sanità, Rome, Italy.
  62. Auto-immune Disease Unit, Hospital de Curry Cabral, Centro Hospitalar de Lisboa Central, EPE, Lisbon, Portugal.
  63. Rheumatology and Clinical Immunology Unit, ASST-Spedali Civili and University of Brescia, Italy.
  64. Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy.
  65. Institute of Management, Scuola Superiore Sant’Anna, Pisa, Italy.
  66. Department of Internal Medicine and Immunology, Erasmus MC, Rotterdam, Netherlands.
  67. Department of Rheumatology and Clinical Immunology, University Medical Center Utrecht, Utrecht University, The Netherlands.
  68. Liga Portuguesa Contra as Doenças Reumáticas, Núcleo Síndrome de Sjögren, Lisbon, Portugal.
  69. Department of Rheumatology, Leiden University Medical Center, Leiden, the Netherlands.
  70. Institute of Human Genetics, Medical University of Innsbruck, Austria.
  71. Research Laboratory and Academic Division of Clinical Rheumatology, Department of Internal Medicine, IRCCS Polyclinic Hospital San Martino, University of Genoa, Italy.
  72. Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, and Rheumatology Unit, University of Pisa, Italy. marta.mosca@unipi.it, ern.reconnet@ao-pisa.toscana.it

CER15568
2022 Vol.40, N°5 ,Suppl.134
PI 0003, PF 0011
Review

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PMID: 35349419 [PubMed]

Received: 09/02/2022
Accepted : 22/02/2022
In Press: 29/03/2022
Published: 18/05/2022

Abstract

In order to address the main challenges related to the rare diseases (RDs) the European Commission launched the European Reference Networks (ERNs), virtual networks involving healthcare providers (HCPs) across Europe. The mission of the ERNs is to tackle low prevalence and RDs that require highly specialised treatment and a concentration of knowledge and resources. In fact, ERNs offer the potential to give patients and healthcare professionals across the EU access to the best expertise and timely exchange of lifesaving knowledge, trying to make the knowledge travelling more than patients. For this reason, ERNs were established as concrete European infrastructures, and this is particularly crucial in the framework of rare and complex diseases in which no country alone has the whole knowledge and capacity to treat all types of patients. It has been five years since their kick-off launch in Vilnius in 2017. The 24 ERNs have been intensively working on different transversal areas, including patient management, education, clinical practice guidelines, patients’ care pathways and many other fundamental topics. The present work is therefore aimed not only at reporting a summary of the main activities and milestones reached so far, but also at celebrating the first 5 years of the ERN on Rare and Complex Connective Tissue and Musculo-skeletal Diseases (ReCONNET), in which the members of the network built together one of the 24 infrastructures that are hopefully going to change the scenario of rare diseases across the EU.

DOI: https://doi.org/10.55563/clinexprheumatol/d2qz38

Rheumatology Article