gms | German Medical Science

26. Jahrestagung des Netzwerks Evidenzbasierte Medizin e. V.

Netzwerk Evidenzbasierte Medizin e. V. (EbM-Netzwerk)

26. - 28.03.2025, Freiburg

Advocacy for clinical trial transparency in Germany: the Alliance for Transparency in Health Research

Meeting Abstract

  • author Valérie Labonté - Cochrane Deutschland Stiftung, Deutschland; Institut für Evidenz in der Medizin, Universitätsklinikum Freiburg, Medizinische Fakultät, Albert-Ludwigs-Universität Freiburg, Deutschland
  • author Till Bruckner - Karolinska Institutet, Schweden
  • author Barbara Buchberger - Robert Koch-Institut, Deutschland
  • author Lea Gorenflo - Cochrane Deutschland Stiftung, Deutschland; Institut für Evidenz in der Medizin, Universitätsklinikum Freiburg, Medizinische Fakultät, Albert-Ludwigs-Universität Freiburg, Deutschland
  • author Stephanie Müller-Ohlraun - Berlin Institute of Health (BIH) at Charité, QUEST Center for Responsible Research, Berlin, Deutschland
  • author Matthias Perleth - Verein zur Förderung der Technologiebewertung im Gesundheitswesen e.V. (HTA.de), Deutschland
  • author Jörg J. Meerpohl - Cochrane Deutschland Stiftung, Deutschland; Institut für Evidenz in der Medizin, Universitätsklinikum Freiburg, Medizinische Fakultät, Albert-Ludwigs-Universität Freiburg, Deutschland

Die EbM der Zukunft – packen wir’s an!. 26. Jahrestagung des Netzwerks Evidenzbasierte Medizin. Freiburg, 26.-28.03.2025. Düsseldorf: German Medical Science GMS Publishing House; 2025. Doc25ebmPS-05-08

doi: 10.3205/25ebm083, urn:nbn:de:0183-25ebm0832

Veröffentlicht: 27. März 2025

© 2025 Labonté et al.
Dieser Artikel ist ein Open-Access-Artikel und steht unter den Lizenzbedingungen der Creative Commons Attribution 4.0 License (Namensnennung). Lizenz-Angaben siehe http://creativecommons.org/licenses/by/4.0/.


Gliederung

Text

Background/research question: Advocating together with partners has the potential to create a greater impact than acting alone and enhances the visibility of the involved institutions. With the aim of improving patient care and patient safety, clinical trial registration and results publication rates in Germany need to improve. Therefore, we gathered a group of campaigners to collaboratively advocate for increased trial transparency in Germany. Here, we describe the entire process, from the initial formation of the alliance to the publication of a position paper that calls on German government bodies to establish a framework ensuring the complete registration of all clinical studies and the publication of all results. Our focus is on our networking activities to inspire other groups planning similar activities.

Methods: With the goal to improve clinical trial registration and publication rates in Germany, a group of 9 campaigners from 4 organisations formed the Alliance for Transparency in Health Research in March 2023. The core group initially met in an online discussion on clinical trial transparency and was completed by personal contact. From then on, potential activities were discussed during monthly online meetings, with Cochrane Germany acting as the facilitator. One of the main activities of the alliance was the collaborative compilation and publication of a position paper.

Results: The Alliance for Transparency in Health Research has been successfully established and will continue its work on clinical trial transparency in Germany. The main achievement of the Alliance so far has been the publication of the position paper, “Unpublished study findings endanger evidence-based health care” [1], in May 2024, co-signed by renowned institutions and followed by encouraging coverage in the national media. Accompanying activities by individual members of the Alliance amplified our efforts to gain visibility in the German political landscape.

Conclusion: We gained valuable experience in networking, advocacy, and campaign work. Our activities did not result in a change of German legislation, but still received attention from the national media and policymakers. The Alliance is firmly determined to continue working on its goal to improve trial transparency in Germany. We are planning to share our experiences with international colleagues and campaigners to spark similar activities in other countries.

Competing interests:

  • VL: none
  • LG: none
  • JM: none
  • BB: none
  • SMO: none

References

1.
;Bündnis Transparenz in der Gesundheitsforschung. Unveröffentlichte Studienergebnisse gefährden die evidenzbasierte Gesundheitsversorgung. Verfügbar unter: https://www.cochrane.de/positionspapier-buendnis-transparenz Externer Link