Flemish network on rare connective tissue diseases (CTD): patient pathways in systemic sclerosis. First steps taken-Reference-Cited by-同舟云学术

Flemish network on rare connective tissue diseases (CTD): patient pathways in systemic sclerosis. First steps taken

Published:2023-12-18 Issue:1 Volume:79 Page:26-33
ISSN:1784-3286
Container-title:Acta Clinica Belgica
language:en
Short-container-title:Acta Clinica Belgica

Author:

Piette Y.¹²³,Van den Bossche F.²,Aerts J.⁴,Aerts N.⁵,Ajeganova S.⁶,Badot V.⁷,Berghen N.⁸,Blockmans D.⁹,Brusselle G.¹⁰¹¹¹²¹³,Caeyers N.¹⁴,De Decker M.¹,De Haes P.¹⁵,De Cock C.¹⁶,De Keyser F.¹⁷,De Langhe E.¹⁸¹⁹,Delcroix M.²⁰,De Nutte H.²¹,De Pauw M.²²,Depicker A.²³,De Sutter A.²⁴,De Sutter J.²⁵,Du Four T.¹⁵,Frank C.⁷,Goubau J.²⁶,Guiot J.²⁷,Gutermuth J.²⁸,Heeman L.²⁹,Houssiau F.³⁰,Hennes I.³¹,Lenaerts J.³²,Lintermans A.³³,Loeys B.³⁴,Luyten H.³⁵,Maeyaert B.³⁶,Malfait F.³⁷,Moeyersoons A.³⁸,Mostmans Y.³⁹,Nijs J.⁴⁰,Poppe B.³⁷,Polfliet K.⁴¹,Ruttens D.⁴²,Sabato V.⁴³,Schoeters E.⁴⁴,Slabbynck H.⁴⁵,Stuer A.⁴⁶,Tamirou F.²⁹,Thevissen Kristof⁴⁷,Van Kersschaever G.⁴⁸,Vanneuville B.⁴⁹,Van Offel J.⁵⁰,Vanthuyne M.³⁰,Van Wabeke J.³⁵,Verbist C.⁴⁶,Vos I.⁵¹,Westhovens R.¹⁹,Wuyts W.⁵²,Yserbyt J.⁵²,Smith V.⁵³^ORCID

Affiliation:

1. Department of Rheumatology, Ghent University Hospital, Ghent, Belgium

2. Department of Internal Medicine, Ghent University, Ghent, Belgium

3. Department of Rheumatology, AZ Sint-Jan Brugge-Oostende AV, Bruges, Belgium

4. Flemish Association for Hereditary Connective Tissue Disorders (Bindweefsel.be), Koersel, Belgium

5. Department of Rheumatology, Ziekenhuis Netwerk Antwerpen (ZNA) Middelheim, Antwerp, Belgium

6. Department of Clinical Sciences, Rheumatology Division, Universitair Ziekenhuis Brussel, Vrije Universiteit Brussel, Brussels, Belgium

7. Department of Rheumatology, CHU Brugmann, Université Libre de Bruxelles, Brussels, Belgium

8. Department of Rheumatology, AZ Klina, Brasschaat, Belgium

9. Department of general internal medicine, University Hospitals Leuven, Leuven, Belgium; Department of Microbiology, Immunology, and Transplantation, Laboratory of clinical infectious and inflammatory disorders, KU Leuven, Leuven, Belgium

10. Laboratory for Translational Research in Obstructive Pulmonary Diseases, Department of Respiratory Medicine, Ghent University Hospital, C. Heymanslaan, Ghent, Belgium

11. Department of Respiratory Medicine, Ghent University Hospital, Ghent, Belgium

12. Department of Epidemiology, Erasmus Medical Center, Rotterdam, The Netherlands

13. Department of Respiratory Diseases, Erasmus Medical Center, Rotterdam, The Netherlands

14. Patiëntexpert ReumaNet, Zaventem, Belgium

15. Department of Dermatology, KU Leuven University Hospitals Leuven, Leuven, Belgium

16. Department of Pneumology, Maria Middelares, Ghent, Belgium

17. Praktijk 10A, Maldegem, Belgium

18. Department of Rheumatology, University Hospitals Leuven, Leuven, Belgium

19. Department of Development and Regeneration, KU Leuven, Leuven, Belgium

20. Clinical Department of Respiratory Diseases, University Hospitals of Leuven and Laboratory of Respiratory Diseases and Thoracic Surgery (BREATHE), Department of Chronic Diseases and Metabolism (CHROMETA), KU Leuven - University of Leuven, Leuven, Belgium

21. Zorgnet-Icuro

22. Department of Cardiology, Ghent University Hospital, Ghent, Belgium

23. Department of Rheumatology, Maria Middelares, Ghent, Belgium

24. Department of Family Practice and Primary Health Care, Ghent University, Ghent, Belgium

25. Department of Cardiology, Hartcentrum, AZ Maria Middelares, Ghent, Belgium; Faculty of Medicine and Health Sciences, Ghent University, Ghent, Belgium

26. Department of Orthopaedics and Traumatology, AZ Maria Middelares, Ghent, Belgium; Department of Orthopedics and Traumatology, UZ Brussel, Brussels, Belgium

27. Department of Respiratory Medicine, Universitary hospital of Liège, Liège, Belgium

28. Department of Dermatology, University Hospital Brussels, Brussels, Belgium

29. Huisartspraktijk De Zwaene, Bruges, Belgium

30. Pôle de Pathologies Rhumatismales Inflammatoires et Systémiques, Institut de Recherche Expérimentale et Clinique, Université Catholique de Louvain; Service de Rhumatologie, Cliniques Universitaires Saint-Luc, Brussels, Belgium

31. CIB-Liga; Patiëntexpert ReumaNet, Zaventem, Belgium

32. Department of Rheumatology, University Hospitals Leuven, Leuven, Belgium; Reumainstituut and Jessa Hospital, Hasselt, Belgium; Department of Rheumatology, AZ Vesalius, Tongeren, Belgium

33. Vlaams Patiënten Platform

34. Department of Clinical Genetics, Radboud University Medical Center, Nijmegen, The Netherlands; Center for Medical Genetics, Antwerp University Hospital & University of Antwerp, Antwerp, Belgium

35. Department of Rheumatology, AZ Sint-Lucas, Ghent, Belgium

36. Department of Rheumatology, AZ Sint-Lucas, Bruges, Belgium

37. Center for Medical Genetics, Ghent University Hospital, Ghent, Belgium; Department for Biomolecular Medicine, Ghent University, Ghent, Belgium

38. Department of Rheumatology, AZ Nikolaas, Sint-Niklaas, Belgium

39. Department of Immunology-Allergology, CHU Brugmann, Université Libre de Bruxelles, Brussels, Belgium; Department of Dermatology, CHU Brugmann, Université Libre de Bruxelles, Brussels, Belgium

40. Department of Cardiac Surgery, UZ Brussels, Brussels, Belgium

41. Sclero’ken VZW; Patiëntexpert ReumaNet, Zaventem, Belgium

42. Department of Respiratory Medicine, Ziekenhuis Oost Limburg, Genk, Belgium; Faculty of Medicine and Life Science, Hasselt University, Hasselt, Belgium

43. Department of Immunology, Allergology, Rheumatology and the Infla-Med Centre of Excellence, University of Antwerp, Antwerp, Belgium; Department of Immunology, Allergology, Rheumatology, Antwerp University Hospital, Antwerp, Belgium; Department of Immunology and Allergology, AZ Jan Palfijn Gent, Ghent, Belgium

44. RaDiOrg

45. Department of Pneumology, ZNA Middelheim, Antwerpen, Belgium

46. Department of Rheumatology, AZ Delta, Roeselare, Belgium

47. Department of Rheumatology, ZOL Genk, Genk, Belgium; Reumacentrum Genk, Genk, Belgium; Faculty of Medicine and Life Sciences, Hasselt University, Diepenbeek, Belgium

48. Wijkgezondheidscentrum De Ridderbuurt, Leuven, Belgium; Domus Medica

49. Department of Rheumatology, Sint-Andries Hospital, Tielt, Belgium; Department of Rheumatology, AZ Groeninge, Kortrijk, Belgium

50. Department of Rheumatology, University Hospital of Antwerp, Antwerp, Belgium

51. Department of Rheumatology, GZA Hospitals, Antwerp, Belgium

52. Department of Pneumology, UZ Leuven, Leuven, Belgium

53. Department of Rheumatology, Ghent University Hospital, Ghent, Belgium; Department of Internal Medicine, Ghent University, Ghent, Belgium; Unit for Molecular Immunology and Inflammation, VIB Inflammation Research Centre (IRC), Ghent, Belgium

Funder

educational grant of Janssen-Cilag

Publisher

Informa UK Limited

Subject

General Medicine

Link

https://www.tandfonline.com/doi/pdf/10.1080/17843286.2023.2280737

Reference29 articles.

1. Decision No 1295/1999/EC of the European Parliament and of the Council of 29 April 1999 adopting a programme of Community action on rare diseases within the framework for action in the field of public health (1999 to 2003) (1999).

2. Orphan medicinal products in Europe and United States to cover needs of patients with rare diseases: an increased common effort is to be foreseen

3. Novel treatments for rare rheumatologic disorders: analysis of the impact of 30 years of the US orphan drug act

4. Council recommendation of 8 June 2009 on an action in the field of rare diseases (2009).

5. Rare Diseases Epidemiology Research

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