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EUSTAR biobanking: recommendations for the collection, storage and distribution of biospecimens in scleroderma research
  1. Christian Beyer1,
  2. Jörg H W Distler1,
  3. Yannick Allanore2,
  4. Martin Aringer3,
  5. Jérôme Avouac1,2,
  6. László Czirják4,
  7. Maurizio Cutolo5,
  8. Nemanja Damjanov6,
  9. Francesco Del Galdo7,
  10. Kim Fligelstone8,
  11. Serena Guiducci9,
  12. Otylia Kowal-Bielecka10,
  13. Jacob M van Laar11,
  14. Marco Martucci-Cerinic9,
  15. Ulf Müller-Ladner12,13,
  16. Gabriela Riemekasten14,
  17. Ingo H Tarner12,13,
  18. Alan Tyndall15,
  19. Ann Tyrrell Kennedy8,
  20. Gabriele Valentini16,
  21. Serena Vettori16,
  22. Ulrich A Walker15,
  23. Christopher Denton17,
  24. Oliver Distler18,
  25. the EUSTAR Biobanking Group
  1. 1Department of Internal Medicine 3 and Institute for Clinical Immunology, University of Erlangen-Nuremberg, Erlangen, Germany
  2. 2Rheumatology A Department, René Descartes University, Paris, France
  3. 3Department of Rheumatology, Carl-Gustav-Carus University Dresden, Dresden, Germany
  4. 4Department of Immunology and Rheumatology, University of Pécs, Pécs, Hungary
  5. 5Research Laboratory and Academic Unit of Clinical Rheumatology, Department of Internal Medicine, University of Genova, Genova, Italy
  6. 6Institute of Rheumatology, University of Belgrade, Belgrade, Serbia
  7. 7Section of Musculoskeletal Disease, Institute of Molecular Medicine, St James's University Hospital Leeds, Leeds, UK
  8. 8Federation of the European Scleroderma Associations (FESCA), Froyennes, Belgium
  9. 9Department of BioMedicine, Division of Rheumatology, University of Florence, Florence, Italy
  10. 10Department of Rheumatology and Internal Medicine, Medical University of Bialystok, Bialystok, Poland
  11. 11Musculoskeletal Research Group, Institute of Cellular Medicine, Newcastle University, Newcastle, UK
  12. 12Department of Internal Medicine and Rheumatology, Justus-Liebig-University Giessen, Giessen, Germany
  13. 13Department of Rheumatology, Clinical Immunology, Osteology and Physical Medicine, Kerckhoff-Klinik, Bad Nauheim, Germany
  14. 14Department of Rheumatology and Clinical Immunology, Charité Universitätsmedizin Berlin, Berlin, Germany
  15. 15Department of Rheumatology, Basel University, Basel, Switzerland
  16. 16Rheumatology Department, Second University of Naples, Naples, Italy
  17. 17Rheumatology Department, Royal Free Hospital London, London, UK
  18. 18Department of Rheumatology, Center of Experimental Rheumatology and Center of Integrative Human Physiology, University Hospital Zurich, Zurich, Switzerland
  1. Correspondence to Oliver Distler, Department of Rheumatology, University Hospital Zurich, Gloriastrasse 25, 8091 Zürich, Switzerland; oliver.distler{at}usz.ch

Abstract

The European League Against Rheumatism Scleroderma Trials and Research Group (EUSTAR) has established an online database with clinical data of currently more than 8200 patients with systemic sclerosis (SSc). In addition to clinical research, EUSTAR fosters biomolecular studies to develop novel biomarkers and therapies for SSc. High-quality biospecimens are the basis for successful biomolecular studies. The EUSTAR biobanking group has therefore developed recommendations to standardise the collection, storage and distribution of SSc biospecimens at EUSTAR centres. These recommendations consider the scientific challenges associated with biomolecular research in SSc and the organisational requirements of EUSTAR. They were approved by the EUSTAR executive committee as well as the EUSTAR board. Once they become effective, these recommendations will be the basis for international EUSTAR studies with large numbers of SSc biospecimens. These recommendations might also be followed by other SSc consortia to enable exchange of biosamples between different SSc initiatives and might serve as a template for biobanking initiatives in other rheumatic diseases.

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Footnotes

  • Competing interests EUSTAR is supported by EULAR. There are no other competing interests.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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