Research I 7 March 2025
Advancing Research & Patient Advocacy with a Novel Methodology
To generate knowledge, we had to create our own tools, and we hope they are useful for advocacy in other areas too! In collaboration with Syreon, we are proud to be pioneers in developing a novel methodology for data collection and analysis within EuroACT. This innovative approach delivers high-quality insights, strengthening research and advocacy efforts.
By enhancing data collection techniques, we empower researchers and patient advocacy groups to apply this methodology across various disease areas, expanding its impact. Our work has also been submitted for peer-reviewed, open-access evaluation to:
- Demonstrate the reliability of this method and invite constructive feedback.
- Increase project visibility through an accessible, widely available resource.
- Encourage adoption of this methodology in other disease areas.
This groundbreaking approach marks a major step forward, making data-driven advocacy more effective and accessible than ever.
ABOUT THE PROJECT
EuroACT is a research project initiated by WECAN and the European Hematology Community. The project aims to understand the clinical trial landscape in the European region, based on data extracted from all relevant European clinical trial registers. Data from the past five years will unveil differences where clinical trials have been run in European countries and will describe how and which patient-reported outcomes (PROs) and quality-of-life (QoL) instruments have been used in clinical trials.
