Academic Journal
The Austrian MS database and the Austrian MS cohort : A national effort towards data harmonization and prospective data collection.
| Τίτλος: | The Austrian MS database and the Austrian MS cohort : A national effort towards data harmonization and prospective data collection. |
|---|---|
| Συγγραφείς: | Bsteh G; Department of Neurology, Medical University of Vienna, Vienna, Austria. gabriel.bsteh@meduniwien.ac.at.; Comprehensive Center for Clinical Neurosciences & Mental Health, Medical University of Vienna, Vienna, Austria. gabriel.bsteh@meduniwien.ac.at., Föttinger F; Department of Neurology, Medical University of Vienna, Vienna, Austria.; Comprehensive Center for Clinical Neurosciences & Mental Health, Medical University of Vienna, Vienna, Austria., Ponleitner M; Department of Neurology, Medical University of Vienna, Vienna, Austria.; Comprehensive Center for Clinical Neurosciences & Mental Health, Medical University of Vienna, Vienna, Austria., Berek K; Department of Neurology, Medical University of Innsbruck, Innsbruck, Austria., Di Pauli F; Department of Neurology, Medical University of Innsbruck, Innsbruck, Austria., Heschl B; Department of Neurology, Medical University of Graz, Graz, Austria., Wurth S; Department of Neurology, Medical University of Graz, Graz, Austria., Deisenhammer F; Department of Neurology, Medical University of Innsbruck, Innsbruck, Austria., Enzinger C; Department of Neurology, Medical University of Graz, Graz, Austria., Berger T; Department of Neurology, Medical University of Vienna, Vienna, Austria.; Comprehensive Center for Clinical Neurosciences & Mental Health, Medical University of Vienna, Vienna, Austria., Khalil M; Department of Neurology, Medical University of Graz, Graz, Austria. michael.khalil@medunigraz.at., Hegen H; Department of Neurology, Medical University of Innsbruck, Innsbruck, Austria. harald.hegen@i-med.ac.at. |
| Συλλογικό Έργο: | Austrian Multiple Sclerosis Database, Austrian MS cohort study group |
| Πηγή: | Wiener klinische Wochenschrift [Wien Klin Wochenschr] 2026 Jul; Vol. 138 (13-14), pp. 394-402. Date of Electronic Publication: 2026 Jan 12. |
| Τύπος έκδοσης: | Journal Article |
| Γλώσσα: | English |
| Στοιχεία περιοδικού: | Publisher: Springer Country of Publication: Austria NLM ID: 21620870R Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1613-7671 (Electronic) Linking ISSN: 00435325 NLM ISO Abbreviation: Wien Klin Wochenschr Subsets: MEDLINE |
| Imprint Name(s): | Original Publication: Wien ; New York : Springer |
| Ιατρικοί όροι (MeSH): | Multiple Sclerosis*/epidemiology , Multiple Sclerosis*/therapy , Multiple Sclerosis*/diagnosis , Registries*/standards , Data Collection*/standards , Databases, Factual*, Austria ; Humans ; Prospective Studies ; Cohort Studies |
| Περίληψη: | Background: Multiple sclerosis (MS) is treated with various disease-modifying therapies (DMTs) with differing efficacy and risks, yet the disease course varies markedly within and between individuals. Defining optimal treatment strategies through randomized trials is impractical because of the required sample sizes, costs and long follow-up. Large multicenter registries and prospective observational cohorts are therefore essential but demand harmonized, standardized, user-friendly data capture with rigorous quality control and data protection. Objective: This project aims to establish standardized, nationwide MS data collection in Austria. Methods: The project consists of five key components: (i) harmonization of data collection, (ii) creation of infrastructure for data sharing, (iii) retrospective harmonized data collection (Austrian MS Database, AMSD), (iv) prospective harmonized data collection (Austrian MS Cohort, AMSC) and (v) aggregated analyses. Results: A comprehensive set of harmonized common data elements (CDE) comprising clinical and paraclinical data was developed and a common data collection infrastructure was generated using the web-based Research, Documentation, and Analysis platform (webRDA), an innovative data capture, processing and analysis system provided by the Medical University of Vienna offering pseudonymized storage of data supported by a robust permissions system fulfilling legal data protection and ethical requirements. The AMSC is set up as a standardized prospective collection of demographic, clinical, epidemiological, psychosocioeconomic, magnetic resonance imaging (MRI), and optical coherence tomography (OCT) data as well as body fluids. Conclusion: The AMSD and AMSC will facilitate the evidence-based development of prognostic biomarkers, individualized therapy strategies and treatment sequences based on a high-quality, population-based dataset of more than 8000 people with MS. (© 2026. The Author(s).) |
| Competing Interests: | Conflict of interest: The AMSC is an investigator-initiated study with no financial interests. G. Bsteh, F. Föttinger, M. Ponleitner, K. Berek, F.D. Pauli, B. Heschl, S. Wurth, F. Deisenhammer, C. Enzinger, T. Berger, M. Khalil and H. Hegen declare that they have no competing interests. |
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| Contributed Indexing: | Keywords: Common data element; Data collection; Data processing; Infrastructure; Multiple sclerosis |
| Entry Date(s): | Date Created: 20260112 Date Completed: 20260716 Latest Revision: 20260726 |
| Update Code: | 20260726 |
| PubMed Central ID: | PMC13375655 |
| DOI: | 10.1007/s00508-025-02689-2 |
| PMID: | 41524808 |
| Βάση Δεδομένων: | MEDLINE |
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