title: EUSTAR biobanking: recommendations for the collection, storage and distribution of biospecimens in scleroderma research.
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.
authors.affiliation: Department of Internal Medicine, Institute for Clinical Immunology, University of Erlangen-Nuremberg, Germany.
authors.forename: Christian
authors.initials: C
authors.lastname: Beyer
authors.forename: Jörg H W
authors.initials: JH
authors.lastname: Distler
authors.forename: Yannick
authors.initials: Y
authors.lastname: Allanore
authors.forename: Martin
authors.initials: M
authors.lastname: Aringer
authors.forename: Jérôme
authors.initials: J
authors.lastname: Avouac
authors.forename: László
authors.initials: L
authors.lastname: Czirják
authors.forename: Maurizio
authors.initials: M
authors.lastname: Cutolo
authors.forename: Nemanja
authors.initials: N
authors.lastname: Damjanov
authors.forename: Francesco
authors.initials: F
authors.lastname: Del Galdo
authors.forename: Kim
authors.initials: K
authors.lastname: Fligelstone
authors.forename: Serena
authors.initials: S
authors.lastname: Guiducci
authors.forename: Otylia
authors.initials: O
authors.lastname: Kowal-Bielecka
authors.forename: Jacob M
authors.initials: JM
authors.lastname: van Laar
authors.forename: Marco
authors.initials: M
authors.lastname: Martucci-Cerinic
authors.forename: Ulf
authors.initials: U
authors.lastname: Müller-Ladner
authors.forename: Gabriela
authors.initials: G
authors.lastname: Riemekasten
authors.forename: Ingo H
authors.initials: IH
authors.lastname: Tarner
authors.forename: Alan
authors.initials: A
authors.lastname: Tyndall
authors.forename: Ann Tyrrell
authors.initials: AT
authors.lastname: Kennedy
authors.forename: Gabriele
authors.initials: G
authors.lastname: Valentini
authors.forename: Serena
authors.initials: S
authors.lastname: Vettori
authors.forename: Ulrich A
authors.initials: UA
authors.lastname: Walker
authors.forename: Christopher
authors.initials: C
authors.lastname: Denton
authors.forename: Oliver
authors.initials: O
authors.lastname: Distler
mesh_terms: D002985:Clinical Protocols; D006801:Humans; D011785:Quality Assurance, Health Care; D017751:Safety Management; D012595:Scleroderma, Systemic / Q000473:pathology*; D013048:Specimen Handling / Q000379:methods / Q000592:standards; D014015:Tissue Banks / Q000941:ethics / Q000331:legislation & jurisprudence / Q000458:organization & administration* / Q000592:standards; D014021:Tissue Preservation / Q000379:methods / Q000592:standards; D014186:Transportation / Q000379:methods / Q000592:standards