The EHC Think Tank has published Patient registries for bleeding disorders: how to strengthen transparency to improve patient care?, developed by the Registries workstream. Between 2021 and 2023, members met in online workshops and at a face-to-face event, where discussions led to a consensus on the recommendations presented.

The purpose of this paper is to address challenges that limit the potential of patient registries for bleeding disorders, including fragmented data, limited transparency, and obstacles to collaborations between existing initiatives at national and international levels. These factors reduce the ability to generate accessible, high-quality data that can inform regulatory and health authority decisions.

To respond to these issues, the Registries workstream developed recommendations that emphasise transparency in terms of purpose, governance, data collection, data sharing, and funding. A proposed minimum core dataset is also included to support alignment across registries in Europe, improve data quality, and ultimately strengthen patient care.

This work was made possible through the contribution of members of the EHC Think Tank Workstream on Registries, and the authors thank all participants for their involvement.