View in EDS

Patient partnership model in rare and complex rheumatological conditions: research and beyond in European Reference Network ReCONNET.

Saved in:
Bibliographic Details
Title: Patient partnership model in rare and complex rheumatological conditions: research and beyond in European Reference Network ReCONNET.
Authors: Andersen J; Lupus Europe, Brussels, Belgium., Talarico R; Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy. Electronic address: rosaria.talarico@ao-pisa.toscana.it., Marinello D; Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy., Aguilera S; Spanish Association for Antiphospholipid Syndrome, Elche, Spain., Galetti I; Federation of European Scleroderma Associations, Milan, Italy., Bandeira M; 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., Ballarin Castan J; Asociación Española de pacientes con Enfermedad Asociada a IgG4, Madrid, Spain., Blagojevic J; Department of Experimental and Clinical Medicine, University of Florence, and Division of Rheumatology Azienda Ospedaliero Universitaria Careggi, Florence., Bouillot C; Sjögren Europe, Gland, Switzerland., Bucsa C; Association of Romanian Relapsing Polychondritis Patients, Cluj-Napoca, Romania; Iuliu Hațieganu University of Medicine and Pharmacy, Cluj-Napoca, Romania., Cannizzo S; Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy., Cavagna L; Department of Rheumatology, IRCCS Policlinico San Matteo Foundation, Pavia, Italy., Ciupera M; Let's stick together Association (3majmy się Razem Association), Warszawa, Poland., Collado E; Asociación Nacional del Síndrome de Ehlers-Danlos e Hiperlaxitud, Murcia, Spain., Cornet A; Lupus Europe, Brussels, Belgium., Damian L; Department of Rheumatology, Emergency County Teaching Hospital, University of Medicine Iuliu Hatieganu, ClujNapoca, Romania., Diederichsen L; Center for Rheumatology and Spine Diseases, COPEACT, Copenhagen University Hospital, Rigs hospitalet, Copenhagen, Denmark., Drapalova O; Czech Myositis Working Group, Czech League against Rheumatism, Prague, Czech Republic., Elefante E; Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy., Farrington S; FESCA-Federation of European Scleroderma Associations, Saint Maur, Belgium., Frank C; bindweefsel.be (Flemish Association for Hereditary Connective Tissue Disorders), Koersel, Belgium., Gaglioti A; Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy., Guiducci S; Department of Experimental and Clinical Medicine, University of Florence, and Division of Rheumatology Azienda Ospedaliero Universitaria Careggi, Florence., Guimaraes V; Liga Portuguesa Contra as Doenças Reumáticas, Lisbon, Portugal., Luciu R; ART Cluj-Association of Patients with Inflammatory Rheumatic Diseases in Transylvania, Cluj-Napoca, Romania., Matthews L; Relapsing Polychondritis Awareness and Support, Worcester, UK., Moroncini G; Department of Clinical and Molecular Sciences, Marche Polytechnic University and Clinica Medica, Department of Internal Medicine, Marche University Hospital, Ancona, Italy., Olesińska M; Department of Connective Tissue Diseases, National Institute of Geriatrics, Rheumatology and Rehabilitation, Warsaw, Poland., Patsalias A; European IgG4-RD Patient Federation, Brussels, Belgium., Peene I; Ghent University Hospital and Gent University, Ghent, Belgium., Piantoni S; Rheumatology and Clinical Immunology Unit, Azienda Socio Sanitaria Territoriale, Spedali Civili, Department of Clinical and Experimental Sciences, ASST Spedali Civili, Brescia, Italy; University of Brescia, Brescia, Italy., Pizzorni C; Research Laboratory and Academic Division of Clinical Rheumatology, Department of Internal Medicine, IRCCS Polyclinic Hospital San Martino, University of Genoa, Italy., Paolino S; Research Laboratory and Academic Division of Clinical Rheumatology, Department of Internal Medicine, IRCCS Polyclinic Hospital San Martino, University of Genoa, Italy., Pha M; Groupement hospitalier Pitié-Salpêtrière, AP-HP, centre de référence des maladies auto-immunes et auto-inflammatoires systémiques rares de l'adulte d'Ile-de-France, Centre et Martinique, service de médecine interne 2, Institut E3M, Paris, France., Pamfil C; Department of Rheumatology, Emergency County Teaching Hospital, University of Medicine Iuliu Hatieganu, ClujNapoca, Romania., Scheerhoorn-Pullen J; Dutch Association for Patients with Rare Connective Tissue Diseases, Utrecht, Netherlands., Schlüter S; Myositis-Gruppe, Deutsche Gesellschaft für Muskelkranke, Freiburg, Germany., Scrivo R; Rheumatology Unit, Department of Clinical Internal, Anaesthesiologic and Cardiovascular Sciences, Sapienza University, Rome, Italy., Sciascia S; University Center of Excellence on Nephrologic, Rheumatologic and Rare Diseases, Department of Clinical and Biological Sciences, and SCDU Nephrology and Dialysis, S. Giovanni Bosco Hospital, Turin, Italy, ASL Città di Torino, Turin, Italy; University of Turin, Turin, Italy., Testoni M; Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy., Vieira A; Liga Portuguesa Contra as Doenças Reumáticas, Lisbon, Portugal., Cutolo M; Research Laboratory and Academic Division of Clinical Rheumatology, Department of Internal Medicine, IRCCS Polyclinic Hospital San Martino, University of Genoa, Italy., Burmester G; Department of Rheumatology and Clinical Immunology, Freie Universität Berlin and Humboldt-Universität zu Berlin, Charité Universitätsmedizin Berlin, Berlin, Germany., Mosca M; Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy.
Source: The Lancet. Rheumatology [Lancet Rheumatol] 2026 Apr; Vol. 8 (4), pp. e311-e319. Date of Electronic Publication: 2026 Jan 21.
Publication Type: Journal Article; Review
Journal Info: Publisher: Elsevier Ltd Country of Publication: England NLM ID: 101765308 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 2665-9913 (Electronic) Linking ISSN: 26659913 NLM ISO Abbreviation: Lancet Rheumatol Subsets: MEDLINE
Database: MEDLINE Ultimate
FullText Text:
  Availability: 0
Header DbId: mdl
DbLabel: MEDLINE Ultimate
An: 41579879
AccessLevel: 2
PubType: Academic Journal
PubTypeId: academicJournal
PreciseRelevancyScore: 0
IllustrationInfo
Items – Name: Title
  Label: Title
  Group: Ti
  Data: Patient partnership model in rare and complex rheumatological conditions: research and beyond in European Reference Network ReCONNET.
– Name: Author
  Label: Authors
  Group: Au
  Data: <searchLink fieldCode="AU" term="%22Andersen+J%22">Andersen J</searchLink>; Lupus Europe, Brussels, Belgium.<br /><searchLink fieldCode="AU" term="%22Talarico+R%22">Talarico R</searchLink>; Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy. Electronic address: rosaria.talarico@ao-pisa.toscana.it.<br /><searchLink fieldCode="AU" term="%22Marinello+D%22">Marinello D</searchLink>; Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy.<br /><searchLink fieldCode="AU" term="%22Aguilera+S%22">Aguilera S</searchLink>; Spanish Association for Antiphospholipid Syndrome, Elche, Spain.<br /><searchLink fieldCode="AU" term="%22Galetti+I%22">Galetti I</searchLink>; Federation of European Scleroderma Associations, Milan, Italy.<br /><searchLink fieldCode="AU" term="%22Bandeira+M%22">Bandeira M</searchLink>; 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.<br /><searchLink fieldCode="AU" term="%22Ballarin+Castan+J%22">Ballarin Castan J</searchLink>; Asociación Española de pacientes con Enfermedad Asociada a IgG4, Madrid, Spain.<br /><searchLink fieldCode="AU" term="%22Blagojevic+J%22">Blagojevic J</searchLink>; Department of Experimental and Clinical Medicine, University of Florence, and Division of Rheumatology Azienda Ospedaliero Universitaria Careggi, Florence.<br /><searchLink fieldCode="AU" term="%22Bouillot+C%22">Bouillot C</searchLink>; Sjögren Europe, Gland, Switzerland.<br /><searchLink fieldCode="AU" term="%22Bucsa+C%22">Bucsa C</searchLink>; Association of Romanian Relapsing Polychondritis Patients, Cluj-Napoca, Romania; Iuliu Hațieganu University of Medicine and Pharmacy, Cluj-Napoca, Romania.<br /><searchLink fieldCode="AU" term="%22Cannizzo+S%22">Cannizzo S</searchLink>; Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy.<br /><searchLink fieldCode="AU" term="%22Cavagna+L%22">Cavagna L</searchLink>; Department of Rheumatology, IRCCS Policlinico San Matteo Foundation, Pavia, Italy.<br /><searchLink fieldCode="AU" term="%22Ciupera+M%22">Ciupera M</searchLink>; Let's stick together Association (3majmy się Razem Association), Warszawa, Poland.<br /><searchLink fieldCode="AU" term="%22Collado+E%22">Collado E</searchLink>; Asociación Nacional del Síndrome de Ehlers-Danlos e Hiperlaxitud, Murcia, Spain.<br /><searchLink fieldCode="AU" term="%22Cornet+A%22">Cornet A</searchLink>; Lupus Europe, Brussels, Belgium.<br /><searchLink fieldCode="AU" term="%22Damian+L%22">Damian L</searchLink>; Department of Rheumatology, Emergency County Teaching Hospital, University of Medicine Iuliu Hatieganu, ClujNapoca, Romania.<br /><searchLink fieldCode="AU" term="%22Diederichsen+L%22">Diederichsen L</searchLink>; Center for Rheumatology and Spine Diseases, COPEACT, Copenhagen University Hospital, Rigs hospitalet, Copenhagen, Denmark.<br /><searchLink fieldCode="AU" term="%22Drapalova+O%22">Drapalova O</searchLink>; Czech Myositis Working Group, Czech League against Rheumatism, Prague, Czech Republic.<br /><searchLink fieldCode="AU" term="%22Elefante+E%22">Elefante E</searchLink>; Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy.<br /><searchLink fieldCode="AU" term="%22Farrington+S%22">Farrington S</searchLink>; FESCA-Federation of European Scleroderma Associations, Saint Maur, Belgium.<br /><searchLink fieldCode="AU" term="%22Frank+C%22">Frank C</searchLink>; bindweefsel.be (Flemish Association for Hereditary Connective Tissue Disorders), Koersel, Belgium.<br /><searchLink fieldCode="AU" term="%22Gaglioti+A%22">Gaglioti A</searchLink>; Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy.<br /><searchLink fieldCode="AU" term="%22Guiducci+S%22">Guiducci S</searchLink>; Department of Experimental and Clinical Medicine, University of Florence, and Division of Rheumatology Azienda Ospedaliero Universitaria Careggi, Florence.<br /><searchLink fieldCode="AU" term="%22Guimaraes+V%22">Guimaraes V</searchLink>; Liga Portuguesa Contra as Doenças Reumáticas, Lisbon, Portugal.<br /><searchLink fieldCode="AU" term="%22Luciu+R%22">Luciu R</searchLink>; ART Cluj-Association of Patients with Inflammatory Rheumatic Diseases in Transylvania, Cluj-Napoca, Romania.<br /><searchLink fieldCode="AU" term="%22Matthews+L%22">Matthews L</searchLink>; Relapsing Polychondritis Awareness and Support, Worcester, UK.<br /><searchLink fieldCode="AU" term="%22Moroncini+G%22">Moroncini G</searchLink>; Department of Clinical and Molecular Sciences, Marche Polytechnic University and Clinica Medica, Department of Internal Medicine, Marche University Hospital, Ancona, Italy.<br /><searchLink fieldCode="AU" term="%22Olesińska+M%22">Olesińska M</searchLink>; Department of Connective Tissue Diseases, National Institute of Geriatrics, Rheumatology and Rehabilitation, Warsaw, Poland.<br /><searchLink fieldCode="AU" term="%22Patsalias+A%22">Patsalias A</searchLink>; European IgG4-RD Patient Federation, Brussels, Belgium.<br /><searchLink fieldCode="AU" term="%22Peene+I%22">Peene I</searchLink>; Ghent University Hospital and Gent University, Ghent, Belgium.<br /><searchLink fieldCode="AU" term="%22Piantoni+S%22">Piantoni S</searchLink>; Rheumatology and Clinical Immunology Unit, Azienda Socio Sanitaria Territoriale, Spedali Civili, Department of Clinical and Experimental Sciences, ASST Spedali Civili, Brescia, Italy; University of Brescia, Brescia, Italy.<br /><searchLink fieldCode="AU" term="%22Pizzorni+C%22">Pizzorni C</searchLink>; Research Laboratory and Academic Division of Clinical Rheumatology, Department of Internal Medicine, IRCCS Polyclinic Hospital San Martino, University of Genoa, Italy.<br /><searchLink fieldCode="AU" term="%22Paolino+S%22">Paolino S</searchLink>; Research Laboratory and Academic Division of Clinical Rheumatology, Department of Internal Medicine, IRCCS Polyclinic Hospital San Martino, University of Genoa, Italy.<br /><searchLink fieldCode="AU" term="%22Pha+M%22">Pha M</searchLink>; Groupement hospitalier Pitié-Salpêtrière, AP-HP, centre de référence des maladies auto-immunes et auto-inflammatoires systémiques rares de l'adulte d'Ile-de-France, Centre et Martinique, service de médecine interne 2, Institut E3M, Paris, France.<br /><searchLink fieldCode="AU" term="%22Pamfil+C%22">Pamfil C</searchLink>; Department of Rheumatology, Emergency County Teaching Hospital, University of Medicine Iuliu Hatieganu, ClujNapoca, Romania.<br /><searchLink fieldCode="AU" term="%22Scheerhoorn-Pullen+J%22">Scheerhoorn-Pullen J</searchLink>; Dutch Association for Patients with Rare Connective Tissue Diseases, Utrecht, Netherlands.<br /><searchLink fieldCode="AU" term="%22Schlüter+S%22">Schlüter S</searchLink>; Myositis-Gruppe, Deutsche Gesellschaft für Muskelkranke, Freiburg, Germany.<br /><searchLink fieldCode="AU" term="%22Scrivo+R%22">Scrivo R</searchLink>; Rheumatology Unit, Department of Clinical Internal, Anaesthesiologic and Cardiovascular Sciences, Sapienza University, Rome, Italy.<br /><searchLink fieldCode="AU" term="%22Sciascia+S%22">Sciascia S</searchLink>; University Center of Excellence on Nephrologic, Rheumatologic and Rare Diseases, Department of Clinical and Biological Sciences, and SCDU Nephrology and Dialysis, S. Giovanni Bosco Hospital, Turin, Italy, ASL Città di Torino, Turin, Italy; University of Turin, Turin, Italy.<br /><searchLink fieldCode="AU" term="%22Testoni+M%22">Testoni M</searchLink>; Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy.<br /><searchLink fieldCode="AU" term="%22Vieira+A%22">Vieira A</searchLink>; Liga Portuguesa Contra as Doenças Reumáticas, Lisbon, Portugal.<br /><searchLink fieldCode="AU" term="%22Cutolo+M%22">Cutolo M</searchLink>; Research Laboratory and Academic Division of Clinical Rheumatology, Department of Internal Medicine, IRCCS Polyclinic Hospital San Martino, University of Genoa, Italy.<br /><searchLink fieldCode="AU" term="%22Burmester+G%22">Burmester G</searchLink>; Department of Rheumatology and Clinical Immunology, Freie Universität Berlin and Humboldt-Universität zu Berlin, Charité Universitätsmedizin Berlin, Berlin, Germany.<br /><searchLink fieldCode="AU" term="%22Mosca+M%22">Mosca M</searchLink>; Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy.
– Name: TitleSource
  Label: Source
  Group: Src
  Data: <searchLink fieldCode="JN" term="%22101765308%22">The Lancet. Rheumatology</searchLink> [Lancet Rheumatol] 2026 Apr; Vol. 8 (4), pp. e311-e319. <i>Date of Electronic Publication: </i>2026 Jan 21.
– Name: TypePub
  Label: Publication Type
  Group: TypPub
  Data: Journal Article; Review
– Name: TitleSource
  Label: Journal Info
  Group: Src
  Data: <i>Publisher: </i><searchLink fieldCode="PB" term="%22Elsevier+Ltd%22">Elsevier Ltd </searchLink><i>Country of Publication: </i>England <i>NLM ID: </i>101765308 <i>Publication Model: </i>Print-Electronic <i>Cited Medium: </i>Internet <i>ISSN: </i>2665-9913 (Electronic) <i>Linking ISSN: </i><searchLink fieldCode="IS" term="%2226659913%22">26659913 </searchLink><i>NLM ISO Abbreviation: </i>Lancet Rheumatol <i>Subsets: </i>MEDLINE
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=mdl&AN=41579879
RecordInfo BibRecord:
  BibEntity:
    Identifiers:
      – Type: doi
        Value: 10.1016/S2665-9913(25)00284-X
    Languages:
      – Code: eng
        Text: English
    PhysicalDescription:
      Pagination:
        StartPage: e311
    Titles:
      – TitleFull: Patient partnership model in rare and complex rheumatological conditions: research and beyond in European Reference Network ReCONNET.
        Type: main
  BibRelationships:
    HasContributorRelationships:
      – PersonEntity:
          Name:
            NameFull: Andersen J
      – PersonEntity:
          Name:
            NameFull: Talarico R
      – PersonEntity:
          Name:
            NameFull: Marinello D
      – PersonEntity:
          Name:
            NameFull: Aguilera S
      – PersonEntity:
          Name:
            NameFull: Galetti I
      – PersonEntity:
          Name:
            NameFull: Bandeira M
      – PersonEntity:
          Name:
            NameFull: Ballarin Castan J
      – PersonEntity:
          Name:
            NameFull: Blagojevic J
      – PersonEntity:
          Name:
            NameFull: Bouillot C
      – PersonEntity:
          Name:
            NameFull: Bucsa C
      – PersonEntity:
          Name:
            NameFull: Cannizzo S
      – PersonEntity:
          Name:
            NameFull: Cavagna L
      – PersonEntity:
          Name:
            NameFull: Ciupera M
      – PersonEntity:
          Name:
            NameFull: Collado E
      – PersonEntity:
          Name:
            NameFull: Cornet A
      – PersonEntity:
          Name:
            NameFull: Damian L
      – PersonEntity:
          Name:
            NameFull: Diederichsen L
      – PersonEntity:
          Name:
            NameFull: Drapalova O
      – PersonEntity:
          Name:
            NameFull: Elefante E
      – PersonEntity:
          Name:
            NameFull: Farrington S
      – PersonEntity:
          Name:
            NameFull: Frank C
      – PersonEntity:
          Name:
            NameFull: Gaglioti A
      – PersonEntity:
          Name:
            NameFull: Guiducci S
      – PersonEntity:
          Name:
            NameFull: Guimaraes V
      – PersonEntity:
          Name:
            NameFull: Luciu R
      – PersonEntity:
          Name:
            NameFull: Matthews L
      – PersonEntity:
          Name:
            NameFull: Moroncini G
      – PersonEntity:
          Name:
            NameFull: Olesińska M
      – PersonEntity:
          Name:
            NameFull: Patsalias A
      – PersonEntity:
          Name:
            NameFull: Peene I
      – PersonEntity:
          Name:
            NameFull: Piantoni S
      – PersonEntity:
          Name:
            NameFull: Pizzorni C
      – PersonEntity:
          Name:
            NameFull: Paolino S
      – PersonEntity:
          Name:
            NameFull: Pha M
      – PersonEntity:
          Name:
            NameFull: Pamfil C
      – PersonEntity:
          Name:
            NameFull: Scheerhoorn-Pullen J
      – PersonEntity:
          Name:
            NameFull: Schlüter S
      – PersonEntity:
          Name:
            NameFull: Scrivo R
      – PersonEntity:
          Name:
            NameFull: Sciascia S
      – PersonEntity:
          Name:
            NameFull: Testoni M
      – PersonEntity:
          Name:
            NameFull: Vieira A
      – PersonEntity:
          Name:
            NameFull: Cutolo M
      – PersonEntity:
          Name:
            NameFull: Burmester G
      – PersonEntity:
          Name:
            NameFull: Mosca M
    IsPartOfRelationships:
      – BibEntity:
          Dates:
            – D: 01
              M: 04
              Text: 2026 Apr
              Type: published
              Y: 2026
          Identifiers:
            – Type: issn-electronic
              Value: 2665-9913
          Numbering:
            – Type: volume
              Value: 8
            – Type: issue
              Value: 4
          Titles:
            – TitleFull: The Lancet. Rheumatology
              Type: main
ResultId 1