Implementing Federated Analysis Using DataSHIELD in the DREAM TO TREAT Atopic Dermatitis Registries Collaboration

Many new biologic treatments and small-molecule agents are emerging and being approved for treating atopic dermatitis. Robust evidence, based on large sample sizes from real-world clinical settings, is needed to investigate the use of these new therapies. However, adequate sample sizes of patient data are difficult to obtain within 1 country alone, requiring international collaboration and data aggregation. To address this need for cooperative research, we investigated the feasibility of an international collaboration of registries to gather data from real-world clinical settings on patients' use of new systemic treatments for atopic dermatitis by creating a federated network between national registries that enables an analysis environment protecting the privacy of information and ensuring compliance with the General Data Protection Regulation. To that end, we deployed an international DataSHIELD set-up, allowing for federated analysis of harmonized data. This secure, protected environment enabled data analyses across all registries simultaneously. Results generated through DataSHIELD were validated through multiple steps by comparing them with parallel analyses outside of DataSHIELD. In conclusion, the international TREAT Registry Taskforce developed a 5-country federated network among European atopic dermatitis registries, demonstrating that DataSHIELD-based federated analysis is a valuable approach in dermatology research, which can be used by others to combine registry resources in information technology and medicine for future collaborations.

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Publication Details

Journal
Journal of Investigative Dermatology
Published
2025-09-04
DOI
https://doi.org/10.1016/j.jid.2025.07.036
Primary Topic
Dermatology and Skin Diseases
Type
article
Field-Weighted Citation Impact
0.00

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article

Implementing Federated Analysis Using DataSHIELD in the DREAM TO TREAT Atopic Dermatitis Registries Collaboration

David Prieto‐Merino, Niels Steen Krogh, Claire McCarthy, Thomas Werfel et al.
Journal of Investigative Dermatology
Dermatology and Skin Diseases
article

Implementing Federated Analysis Using DataSHIELD in the DREAM TO TREAT Atopic Dermatitis Registries Collaboration

David Prieto‐Merino, Niels Steen Krogh, Claire McCarthy, Thomas Werfel, Dmitri Wall, Ahmet Akkoç, Simon Francis Thomsen, Brian B. Farrell, Carsten Flohr, Wouter Ouwerkerk, Dan Henrohn, Louise A. A. Gerbens, Maria Oberländer Christensen, Abaigeal Jackson, Axel Hertzschuch, Lara Cutlar, G. Fletcher, Bolaji Coker, Jochen Schmitt, Phyllis I. Spuls, Erman Guler, Alan D. Irvine, Thomas Birkner, Con Hennessy, Stephan Weidinger, Elizaveta Gribaleva, Ariënna Hyseni, Anne Grete Frostrup, Rowena Randall, Erwin Bruninx, Ida Vittrup Nielsen
article en

Abstract

Many new biologic treatments and small-molecule agents are emerging and being approved for treating atopic dermatitis. Robust evidence, based on large sample sizes from real-world clinical settings, is needed to investigate the use of these new therapies. However, adequate sample sizes of patient data are difficult to obtain within 1 country alone, requiring international collaboration and data aggregation. To address this need for cooperative research, we investigated the feasibility of an international collaboration of registries to gather data from real-world clinical settings on patients' use of new systemic treatments for atopic dermatitis by creating a federated network between national registries that enables an analysis environment protecting the privacy of information and ensuring compliance with the General Data Protection Regulation. To that end, we deployed an international DataSHIELD set-up, allowing for federated analysis of harmonized data. This secure, protected environment enabled data analyses across all registries simultaneously. Results generated through DataSHIELD were validated through multiple steps by comparing them with parallel analyses outside of DataSHIELD. In conclusion, the international TREAT Registry Taskforce developed a 5-country federated network among European atopic dermatitis registries, demonstrating that DataSHIELD-based federated analysis is a valuable approach in dermatology research, which can be used by others to combine registry resources in information technology and medicine for future collaborations.

Journal of Investigative DermatologyVol. 146(3)
Uppsala University (SE), Synlab Czech (Czechia) (CZ), King's College London (GB), Universidad de Alcalá (ES), Pfizer (United Kingdom) (GB), Guy's and St Thomas' NHS Foundation Trust (GB), Frederiksberg Hospital (DK), Copenhagen University Hospital (DK), Mater Misericordiae University Hospital (IE), Children's Health Ireland at Crumlin (IE), Medizinische Hochschule Hannover (DE), University Hospital Schleswig-Holstein (DE), Vhi Healthcare (IE), Pfizer (Belgium) (BE), National Children’s Research Centre (IE), Amsterdam University Medical Centers (NL), University Hospital Carl Gustav Carus (DE), Engineering Solutions International (Ireland) (IE), Pfizer (Ireland) (IE), University of Amsterdam (NL), University of Lübeck (DE)
Pfizer
Openalex Percentile: Top 58%
Dermatology and Skin Diseases
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