Modified EUSTAR Activity Index – 2023 (mEUSTAR-AI): Copyright Notice and Conditions of Use

Published: 2023

Language: English

Type: Disease activity assessment tool (composite index)

Copyright: © EUSTAR (European Scleroderma Trials and Research Group) 2023. All rights reserved.

Description

The EUSTAR Activity Index is a composite tool developed to identify patients with active disease in systemic sclerosis. It was revised and validated in 2016 (Valentini, et al. Ann Rheum Dis. 2017 Jan;76(1):270-276). In 2023, the Index underwent further refinement to develop a modified version that excludes the “worsening of skin fibrosis” component (Herrick, et al. Ann Rheum Dis. 2023;82:963). This 2023 version represents the current form of the Index to be used in future studies, reflecting the practical limitations of obtaining reliable skin fibrosis progression data in large-scale or registry-based research.

The modified EUSTAR Activity Index (mEUSTAR-AI) identifies patients with active disease in systemic sclerosis. based on the following variables:

• modified Rodnan Skin Score (mRSS)
• Digital ulcers
• Tendon friction rubs
• C-reactive protein
• Diffusing capacity of the lung for CO (DLCO) % predicted

The 2023 version has not yet undergone formal validation.

Authors:

Gabriele Valentini, Michele Iudici, Ulrich A. Walker, Veronika K. Jaeger, Murray Baron, Patricia Carreira, László Czirják, Christopher P. Denton, Oliver Distler, Eric Hachulla, Ariane L. Herrick, Otylia Kowal-Bielecka, Janet Pope, Ulf Müller-Ladner, Gabriela Riemekasten, Jerome Avouac, Marc Frerix, Suzana Jordan, Tünde Minier, Elise Siegert, Voon H. Ong, Serena Vettori, Corinna Miede, Margarida Alves, Yannick Allanore

Bibliographic References:

• Valentini G, et al. The European Scleroderma Trials and Research group (EUSTAR) task force for the development of revised activity criteria for systemic sclerosis: derivation and validation of a preliminarily revised EUSTAR activity index. Ann Rheum Dis. 2017 Jan;76(1):270-276. doi: 10.1136/annrheumdis-2016-209768. Epub 2016 Sep 12. PMID: 27621285.
• Herrick A, et al. POS1246  Effects of Nintedanib in Patients with Systemic Sclerosis–Associated Interstitial Lung Disease (SSc-ILD) in Subgroups by Disease Activity Index. Ann Rheum Dis. 2023;82:963.

Objective

To provide a standardised identification of patients with active disease in systemic sclerosis for use in clinical research and registry-based studies.

Conditions of Use

Academic / Clinical / Not-Funded Research:

• The mEUSTAR-AI may be used free of charge, without a license, for academic non-commercial research (including investigator-initiated clinical research without industry collaboration or funding), provided that the following citation appears in all materials and publications: modified EUSTAR Activity Index (mEUSTAR-AI), © EUSTAR 2023. Used with permission.
• To request a copy, please contact: admin@eustar.org

Commercial use:

• Use by academic institutions for commercially funded research or industry collaborations, and by commercial entities (including pharmaceutical companies and CROs) requires a license agreement.
• A commercial entity acquiring or licensing results of academic / not-funded research, which was obtained using the EUSTAR-AI 2023, must have a commercial use license to the EUSTAR-AI before starting to use such results.
• All commercial licenses will be entered into between the licensee and EUSTAR
• To request a license, please contact: admin@eustar.org

Translations and adaptations:

• All translations or electronic adaptations must be authorised by EUSTAR to ensure conceptual and linguistic consistency. Any form of translation or electronic adaption requires a prior license to the EUSTAR-AI 2023 as per the above.

Modification or redistribution:

• You are not authorised to modify, retype, translate, or distribute the mEUSTAR-AI without EUSTAR’s prior written permission. Any form of modification or redistribution requires a prior license to the EUSTAR-AI 2023 as per the above.

Copyright Notice

© EUSTAR (European Scleroderma Trials and Research Group), 2023. All rights reserved.
The modified EUSTAR Activity Index (mEUSTAR-AI) is protected by copyright law.
Reproduction, modification, distribution, or use for commercial purposes without written authorisation from EUSTAR is prohibited.

Summary of Access