An overlook on the current registries for rare and complex connective tissue diseases and the future scenario of TogethERN ReCONNET
BackgroundPatient registries play a crucial role in supporting clinical practice, healthcare planning and medical research, offering a real-world picture on rare and complex connective tissue diseases (rCTDs). ERN ReCONNET launched the first European Registry Infrastructure with the aim to plan, upg...
| Main Authors: | , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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Frontiers Media S.A.
2022-09-01
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| Series: | Frontiers in Medicine |
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| Online Access: | https://www.frontiersin.org/articles/10.3389/fmed.2022.889997/full |
| _version_ | 1811204337781702656 |
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| author | Matilde Bandeira Matilde Bandeira Federica Di Cianni Diana Marinello Laurent Arnaud Sara Cannizzo Sara Cannizzo Claudio Carta Alain Cornet Sara M. Barril Inita Bulina Alessandro Ferraris João Fonseca João Fonseca Andrea Gaglioti Marteen Limper Valentina Lorenzoni Judith Majnik Marco Matucci-Cerinic Marco Matucci-Cerinic Marco Matucci-Cerinic Ilaria Palla Simona Rednic Matthias Schneider Vanessa Smith Vanessa Smith Alberto Sulli Alberto Sulli Klaus Søndergaard Simone Ticciati Angela Tincani Giuseppe Turchetti Rosaria Talarico Maurizio Cutolo Maurizio Cutolo Marta Mosca Domenica Taruscio |
| author_facet | Matilde Bandeira Matilde Bandeira Federica Di Cianni Diana Marinello Laurent Arnaud Sara Cannizzo Sara Cannizzo Claudio Carta Alain Cornet Sara M. Barril Inita Bulina Alessandro Ferraris João Fonseca João Fonseca Andrea Gaglioti Marteen Limper Valentina Lorenzoni Judith Majnik Marco Matucci-Cerinic Marco Matucci-Cerinic Marco Matucci-Cerinic Ilaria Palla Simona Rednic Matthias Schneider Vanessa Smith Vanessa Smith Alberto Sulli Alberto Sulli Klaus Søndergaard Simone Ticciati Angela Tincani Giuseppe Turchetti Rosaria Talarico Maurizio Cutolo Maurizio Cutolo Marta Mosca Domenica Taruscio |
| author_sort | Matilde Bandeira |
| collection | DOAJ |
| description | BackgroundPatient registries play a crucial role in supporting clinical practice, healthcare planning and medical research, offering a real-world picture on rare and complex connective tissue diseases (rCTDs). ERN ReCONNET launched the first European Registry Infrastructure with the aim to plan, upgrade and link registries for rCTDs, with the final goal to promote a harmonized data collection approach all over Europe for rCTDs.MethodsAn online survey addressed to healthcare professionals and patients' representatives active in the field of rCTDs was integrated by an extensive database search in order to build a mapping of existing registries for rCTDs.FindingsA total of 140 registries were found, 38 of which include multiple diseases. No disease-specific registry was identified for relapsing polychondritis, mixed connective tissue disease and undifferentiated connective tissue disease.DiscussionThis overview on the existing registries for rCTDs provides a useful starting point to identify the gaps and the strengths of registries on the coverage of rCTDs, and to develop a common data set and data collection approach for the establishment of the TogethERN ReCONNET Infrastructure. |
| first_indexed | 2024-04-12T03:11:27Z |
| format | Article |
| id | doaj.art-d63d06b3a6134ffc9e48d1f06b3e4790 |
| institution | Directory Open Access Journal |
| issn | 2296-858X |
| language | English |
| last_indexed | 2024-04-12T03:11:27Z |
| publishDate | 2022-09-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Medicine |
| spelling | doaj.art-d63d06b3a6134ffc9e48d1f06b3e47902022-12-22T03:50:21ZengFrontiers Media S.A.Frontiers in Medicine2296-858X2022-09-01910.3389/fmed.2022.889997889997An overlook on the current registries for rare and complex connective tissue diseases and the future scenario of TogethERN ReCONNETMatilde Bandeira0Matilde Bandeira1Federica Di Cianni2Diana Marinello3Laurent Arnaud4Sara Cannizzo5Sara Cannizzo6Claudio Carta7Alain Cornet8Sara M. Barril9Inita Bulina10Alessandro Ferraris11João Fonseca12João Fonseca13Andrea Gaglioti14Marteen Limper15Valentina Lorenzoni16Judith Majnik17Marco Matucci-Cerinic18Marco Matucci-Cerinic19Marco Matucci-Cerinic20Ilaria Palla21Simona Rednic22Matthias Schneider23Vanessa Smith24Vanessa Smith25Alberto Sulli26Alberto Sulli27Klaus Søndergaard28Simone Ticciati29Angela Tincani30Giuseppe Turchetti31Rosaria Talarico32Maurizio Cutolo33Maurizio Cutolo34Marta Mosca35Domenica Taruscio36Rheumatology Department, Lisbon Academic Medical Centre, Hospital de Santa Maria, Centro Hospitalar Universitário Lisboa Norte, Lisbon, PortugalRheumatology Research Unit, Instituto de Medicina Molecular João Lobo Antunes, Faculdade de Medicina, Universidade de Lisboa, Lisbon, PortugalRheumatology Unit, Azienda Ospedaliero Universitaria Pisana, University of Pisa, Pisa, ItalyRheumatology Unit, Azienda Ospedaliero Universitaria Pisana, University of Pisa, Pisa, ItalyRheumatology Department, Hôpitaux Universitaires de Strasbourg, Centre National de Référence des Maladies Systémiques et Auto-immunes Rares Grand-Est Sud-Ouest, Strasbourg, FranceRheumatology Unit, Azienda Ospedaliero Universitaria Pisana, University of Pisa, Pisa, ItalyInstitute of Management, Sant'Anna School of Advanced Studies, Pisa, ItalyNational Centre for Rare Diseases, Istituto Superiore di Sanità, Rome, ItalyLupus Europe, Brussels, BelgiumRheumatology Department, Hospital Universitari Vall d'Hebron, Barcelona, SpainDepartment of Rheumatology, Stradins Clinical University Hospital, Riga, Latvia0Medical Genetics Laboratory, Molecular Medicine Department, San Camillo Forlanini Hospital, Sapienza University, Rome, ItalyRheumatology Department, Lisbon Academic Medical Centre, Hospital de Santa Maria, Centro Hospitalar Universitário Lisboa Norte, Lisbon, PortugalRheumatology Research Unit, Instituto de Medicina Molecular João Lobo Antunes, Faculdade de Medicina, Universidade de Lisboa, Lisbon, PortugalRheumatology Unit, Azienda Ospedaliero Universitaria Pisana, University of Pisa, Pisa, Italy1Department of Rheumatology and Clinical Immunology, University Medical Center Utrecht, Utrecht University, Utrecht, NetherlandsInstitute of Management, Sant'Anna School of Advanced Studies, Pisa, Italy2Department of Rheumatology and Clinical Immunology, Semmelweis University, Budapest, Hungary3Division of Rheumatology and Scleroderma Unit, Department of Clinical and Experimental Medicine, Azienda Ospedaliero Universitaria (AOU) Careggi, University of Florence, Florence, Italy4Unit of Immunology, Rheumatology, Allergy and Rare Diseases, IRCCS San Raffaele Hospital, Milan, Italy5Department of Rheumatology, Emergency County Teaching Hospital, University of Medicine and Pharmacy Iuliu Hatieganu, Cluj-Napoca, RomaniaInstitute of Management, Sant'Anna School of Advanced Studies, Pisa, Italy5Department of Rheumatology, Emergency County Teaching Hospital, University of Medicine and Pharmacy Iuliu Hatieganu, Cluj-Napoca, Romania6Department of Rheumatology, University Hospital Düsseldorf, Heinrich-Heine-University Düsseldorf, Düsseldorf, Germany7Department of Rheumatology, Department of Internal Medicine, Ghent University Hospital, Ghent, Belgium8Unit for Molecular Immunology and Inflammation, VIB Inflammation Research Centre, Ghent, Belgium9Laboratory of Experimental Rheumatology, Division of Clinical Rheumatology, Department of Internal Medicine (DIMI), University of Genoa, Genoa, Italy0IRCCS Polyclinic Hospital San Martino, Genoa, Italy1Department of Rheumatology, Aarhus University Hospital, Aarhus, DenmarkRheumatology Unit, Azienda Ospedaliero Universitaria Pisana, University of Pisa, Pisa, Italy2Rheumatology and Clinical Immunology Unit, ASST-Spedali Civili, University of Brescia, Brescia, ItalyInstitute of Management, Sant'Anna School of Advanced Studies, Pisa, ItalyRheumatology Unit, Azienda Ospedaliero Universitaria Pisana, University of Pisa, Pisa, Italy9Laboratory of Experimental Rheumatology, Division of Clinical Rheumatology, Department of Internal Medicine (DIMI), University of Genoa, Genoa, Italy0IRCCS Polyclinic Hospital San Martino, Genoa, ItalyRheumatology Unit, Azienda Ospedaliero Universitaria Pisana, University of Pisa, Pisa, ItalyNational Centre for Rare Diseases, Istituto Superiore di Sanità, Rome, ItalyBackgroundPatient registries play a crucial role in supporting clinical practice, healthcare planning and medical research, offering a real-world picture on rare and complex connective tissue diseases (rCTDs). ERN ReCONNET launched the first European Registry Infrastructure with the aim to plan, upgrade and link registries for rCTDs, with the final goal to promote a harmonized data collection approach all over Europe for rCTDs.MethodsAn online survey addressed to healthcare professionals and patients' representatives active in the field of rCTDs was integrated by an extensive database search in order to build a mapping of existing registries for rCTDs.FindingsA total of 140 registries were found, 38 of which include multiple diseases. No disease-specific registry was identified for relapsing polychondritis, mixed connective tissue disease and undifferentiated connective tissue disease.DiscussionThis overview on the existing registries for rCTDs provides a useful starting point to identify the gaps and the strengths of registries on the coverage of rCTDs, and to develop a common data set and data collection approach for the establishment of the TogethERN ReCONNET Infrastructure.https://www.frontiersin.org/articles/10.3389/fmed.2022.889997/fullrare and complex connective tissue diseasesregistriesERN ReCONNETTogethERN ReCONNETEuropean Reference Networks |
| spellingShingle | Matilde Bandeira Matilde Bandeira Federica Di Cianni Diana Marinello Laurent Arnaud Sara Cannizzo Sara Cannizzo Claudio Carta Alain Cornet Sara M. Barril Inita Bulina Alessandro Ferraris João Fonseca João Fonseca Andrea Gaglioti Marteen Limper Valentina Lorenzoni Judith Majnik Marco Matucci-Cerinic Marco Matucci-Cerinic Marco Matucci-Cerinic Ilaria Palla Simona Rednic Matthias Schneider Vanessa Smith Vanessa Smith Alberto Sulli Alberto Sulli Klaus Søndergaard Simone Ticciati Angela Tincani Giuseppe Turchetti Rosaria Talarico Maurizio Cutolo Maurizio Cutolo Marta Mosca Domenica Taruscio An overlook on the current registries for rare and complex connective tissue diseases and the future scenario of TogethERN ReCONNET Frontiers in Medicine rare and complex connective tissue diseases registries ERN ReCONNET TogethERN ReCONNET European Reference Networks |
| title | An overlook on the current registries for rare and complex connective tissue diseases and the future scenario of TogethERN ReCONNET |
| title_full | An overlook on the current registries for rare and complex connective tissue diseases and the future scenario of TogethERN ReCONNET |
| title_fullStr | An overlook on the current registries for rare and complex connective tissue diseases and the future scenario of TogethERN ReCONNET |
| title_full_unstemmed | An overlook on the current registries for rare and complex connective tissue diseases and the future scenario of TogethERN ReCONNET |
| title_short | An overlook on the current registries for rare and complex connective tissue diseases and the future scenario of TogethERN ReCONNET |
| title_sort | overlook on the current registries for rare and complex connective tissue diseases and the future scenario of togethern reconnet |
| topic | rare and complex connective tissue diseases registries ERN ReCONNET TogethERN ReCONNET European Reference Networks |
| url | https://www.frontiersin.org/articles/10.3389/fmed.2022.889997/full |
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